It took almost 20 years of agony and countless doctors to get diagnosed with AS. The sad part is I literally had to figure it out on my own, and had to pay a Dr out of pocket to get the tests needed to confirm it. Its extremely disheartening to see so many people with a similar experience, finding answers shouldn't be this damn hard!
Sorry to hear about your history but thank you for sharing. It is sad and very disheartening for many. Hopefully people persist like you and the time needed to come to the right answer shortens significantly with more awareness. Thanks again.
@bonnie fitts well done on figuring it out! Of course it would have been nice if someone was able to help you out earlier but glad there's a plan now. Thanks for sharing. Hope people learn from your story.
@@billmillmine3106 thanks for sharing. Hope you are now on a better management path. The more we can educate everyone, the better for those who have symptoms of AS. Good luck!
@@billmillmine3106 unfortunately, this is not the forum to give specific medical advice. It would be best to still speak to your current team managing you. If you have had years of pain, it will be a multi-faceted approach which may include a combination of medications, lifestyle changes in attempt to keep as active as possible, dietary management and working on one's mental well-being. Easily said in one sentence but we know it will take effort and practice to pull it altogether. Start with small goals for small wins to build confidence. Again, good luck with it all.
I am a 57 year old female. Recently diagnosed. I had the typical “growing pains” in both ankles starting at age 12. Later came plantar fasciitis in both feet. Then the lower back issues that were diagnosed as strained muscles in the back. Then came the sore, stiff neck which made it difficult to turn to look behind me when backing up a vehicle. Then came the tendon pain. Was told by one so called practicing physician that he couldn’t do for me what a good psychiatrist could. I cried all the way home then fired him. But, it caused me to give up trying to figure it out, for a few years. The pain became so intense I could not get out of bed. I had my first hip replacement at 54. Then came back injections in to the spine where my x-rays showed two bone spurs on a vertebrae. Finally, thanks to my husband, I now have a fantastic rheumatologist. After countless sleepless nights, I can finally get through about 6 hours of sleep before the soreness wakes me up. I am currently on Cosyntex and getting a little better. We are all strong because we have to be. Prayers for everyone that is on here.
Sorry to be hear about your journey. Thank you so much for sharing your story. I am sure it will help many who read it and lead to earlier diagnosis. Good luck and hope things can continue to improve.
Late diagnosis made me go from 6'4" to 5'7". I'm angry. Can't play outside with my daughter. Just had a hip replacement 3 months ago. Waiting for approval for my other hip. It's hell. People need to hear about AS. Especially doctors. Having a rough time with this curse. My employer stopped working with me. Threatened to fire me because if I couldn't do my job. Here is a little truth about living with AS. If you have it then I'm sure you've had periods of time like I'm having. I'm sick of it. Just needed to vent.
Thanks for sharing your story and sorry to hear about the rough time you've had with this condition. Though I know we can't reverse how things are, we hope your story will help others get diagnosed earlier and receive the care they deserve.
You're the first person I've heard speak of the severity of this condition. Everyone keeps talking about going for a swim. My father ended up on crutches at the age of 30 because of this. He also had a major height reduction and went from 5'5 to 4'8. He had his hip bones practically removed because that was the way they treated his condition when he was diagnosed in the 60s. I felt crazy reading other comments. It had me questioning if my family had the condition since other people's cases didn't seem as severe.
My AS was diagnosed at age 22, having experienced pain for 5 years. I am now 71. It's been a long haul. I cannot imagine not having AS. If I were 'cured' I think my mind would reinvent it. I and AS are now one and the same thing. At the beginning I was in denial, then I thought I could cure it with exercise. Then came grief...a lot of grief. Then finally acceptance. It sounds a bit like the experience of losing a loved one and in a way I suppose it is. I think AS sufferers develop an uncommon kind of strength and determination that sees them through. Life is still rewarding and wonderful...never give up!
@abhijit pal Thanks for taking an interest in my comments. I eat fish every day, quite a lot of fruit, vegetables, bread, some cakes and sugary things. (which I try to keep away from). I take some anti-inflammatoires: célébrex, aspirin neurophen etc, as and when I need to, but not much. I also take turmeric, fish oils, evening primrose oil. My original comments sounded a little bleak, but despite eventual spine fusion, I have experienced periods of remission over the years, since the first very painful attacks back in the 60s and 70s which sometimes re-occur. I tried Humira injections some 14 years ago, but had a very bad reaction and bad treatment from a doctor and it nearly finished me. I have pursued a sometimes obsessive regime of exercises for decades including weekly hydrotherapy and swimming. I think that's it. Thanks.
@@fjfjfjffjfjfjjf3326 sorry for delay in replying. I'm taking Celecoxhib at present. It's an anti inflammatory which is kinder on the stomach. I take relatively small amounts. You can take a lot of inflamatories for long periods, but I don't like this. It can harm your stomach. I also take the supplements described above. Hope you're not suffering too much!
Hello sir ...I want to ask u that .... Did it causes bamboo spine ...Or joints get destroyed by this .... I am newly diagnosed with as and I m too depressed ...Do this AS make me on wheelchair or on bed for my life time.... Plz plz rply ....I will wait for ur rply
@@Lets_travel_1419 Hi Deepak Thanks for contacting me. I can only describe my own experience and what I've learned but I think it's very unlikely that someone with AS would need a wheelchair except in old age (like me....and I certainly don't need one). My spine however, is quite stiff now, so generally moves 'as one'. My joints are not destroyed, as AS is a disease of the connective tissue, so for me the actual joints are not affected. Also, I've had many remissions ...periods completely free of pain. I've found that the mainstay of treatment is to keep moving, stretching and exercising. I'm still walking, swimming and doing things I love. Everyone's AS seems to be individual to them, but exercise and anti-inflammatory medication are the common treatments. (If you find: www.nass.co.uk exercises are illustrated) It's also useful that those close to you know what you're going through so keep talking! So every best wish and don't give up!
Yes, it is very frustrating. Sorry to hear it has been such a long journey for you. Unfortunately, the awareness of AS is poor but hopefully the more we can do to advocate for people living with AS, the more people we can help people earlier in their journey. Thanks for commenting and we wish you well.
Hien Pham no pain medicine given today except NSAID’s that give you ulcers... it’s crazy to have this much pain in 2020 with no help but shots that give you life threatening infections that cost 700 each and they say you need one per week? No money spent on research. I’m getting depressed living in so much pain with no help but papers to exercise. It’s insane. I saw my Mom suffer and die young and now it’s me...nice to have a diagnosis but no help?
I started having back pain when i was 15. 16 year old me suggested to family doctor it may be ankylosing spondylitis cuz the symptoms all checked. She literally told me if it was AS i wouldn’t be able to do a toe touch ( after making me do a toe touch). Doco assured me and my parents that it wasn’t AS, and jokingly told me to be a doctor. -21 years old and just got my diagnosis of.... ankylosing spondylitis.
That's a shame but grateful for you sharing your story so that someone else can benefit from this. I hope you are now on a good management path. Thanks again.
Stay active......I just turned 62, and suffered with excruciating pain for years. Found out I had AS in 2005, with a positive B27. I stay active, only sleep 6 hours a night, as the longer you sleep, the worse the pain becomes. Just found out I have 2 broken spine, 2 herniated discs, 4 pelvic breaks, and spinal stenosis. Now, I am on Narcotic pain meds, have been since 2005. I hate it. It helps me remain active. Make sure you stretch and do Physical Therapy, at home. Stretch before getting out of bed. There are many self help sites for AS. But staying active is the best therapy. I walk, speed walk, stretch, garden, and bake bread where hand kneading the dough actually helps my ribs and upper spine. God bless you and good luck. Oh....and NEVER allow this disease to define who you are. That alone, makes a huge difference.
Carried the dx of Fibromyalgia for 26 years. My brother was dx'd with AS in his late twenties, i saw everyone i could and did everything i was told to treat the fibromyalgia. So much work, time and money. My SI x-ray was "normal" and my inflammatory markers were negative. But my pain and stiffness increased, my lymphocyte count kept rising and started having kidney issues. Finally a thoracic spine x-ray and a positive HLA-B27 test confirmed the dx just 2 years ago. I have mourned the "if onlys" and am moving forward the best one can. Good luck to all! ❤
I was diagnosed around age 57. I already had been diagnosed with scoliosis in my mid-20’s. I’ve gone from over 5’7” to about 4’10”. The pain is all-encompassing. I call it ‘noise.’ I have a very loud life.
Don’t give up… I’m almost 67 and just diagnosed recently. The prospect of new treatments offers me real hope for a better future. Reach out to your family Dr and insist on referral to a good Rheumatologist.
I'm in Texas and it took me a year and 5 different doctors to get my diagnosis. My xray was normal but I'm so glad a doctor believed me and did an MRI. The MRI showed the inflammation of my SI joints as well as other joints. The doctor that ordered the MRI never thought to send me to a rheumatologist but instead to physical therapy. When physical therapy didn't help, I found another doctor and showed her my MRI. That doctor did a blood work and then sent me to the rheumatologist. It felt great to finally get a diagnosis and treatment that actually works. I see that I'm one of the luckier ones because I found the right doctors before damage.
Thanks for sharing Amanda. We are glad that you got there eventually. It is unfortunate that many still don't or it takes so much longer to get the diagnosis and then receive the appropriate treatment. Hopefully, your story and the more we keep telling such stories, the greater the awareness of AS and the management people can receive.
@@joy-115 Ankylosing Spondylitis is diagnosed/classified based on X-rays of the sacroiliac joints/pelvis. The X-rays however pick up pre-existing damage and do not detect current inflammation or the situation when there is inflammation without accrued damage. MRI is needed for the latter.
@@bjchealthAU I had an x-ray that read moderate thoracic spondylosis when I had pneumonia about 3 months ago and I have been in excruciating thoracic pain since 2004. I also have heart block. I was diagnosed with heart block in 2005 and had to get a pacemaker and then I was diagnosed in 2006 w Lyme disease. But for quits awhile I've been having pain in the areas that sounds like it could be AS. Plus I have bad red eye irritation a lot 😔
My AS was diagnosed at the age of 28 and now I'm 37 years old. In beginning I went through orthopedic doctors. But they were failed to treat me then i went to rheumatologist at the age of 30. He told me that you came to me in well time, as no major damage was done to me. He treated me with embrel injections for about 6 months course. I was cured upto 90% and feeling fantastic, energetic and flexible. Then by time again I realized that i m losing my health and then rheumatologist suggested me to take medicine (Sulfasalazine salt) 500 mg twice a day one tablet brexin. I didn't take any therapy. I just play sports like badminton. And I'm enjoying my life Alhamdulillah
@@kassimfaruk2513 waalaikum assalam I'm not 100 % cured. But 90% I m healthy. I take sulfasalazine salt 500gm medicine twice a day and a brexin tablet daily I would suggest you to go to rheumatologist. He is best in dealing with Ankylosing spondylitis disease.
I was just diagnosed with AS and Psoriatic Arthritis at age 67 which is a very late diagnosis. It hasn't been for lack of seeing a doctor, just not the correct doctor. In my forties I went to orthopedic physicians for back and joint pain and have endured ten surgeries on every major joint. A two level cervical spine fusion, three level lumbar laminectomy and bilateral hip replacement, including surgeries on both knees, shoulders and hands. Even after all the surgeries I was still in chronic pain which made me decide to see a Rheumatologist who told me that I should have came to him 25 years ago, and I now wish I had. I regret that it took so long to be correctly diagnosed with AS, PsA and saddened that the many orthopedic doctors were unable to connect the dots. The damage is done, but hopeful that my quality of life will improve now that I am being treated. Update 2/19/20 Humira didn't work..
I dont have AS but i can imagine it might be difficult to decide which biologic to take .. someone commented that Enbrel worked for him, it may have been in another vid though.. im studying AS as i ran across it looking for back exercises as i have developed tremendous stiffness in my lower back and hands and feet in the mornings, the back pain and stiffness does not abate throughout the day in fact I can't reach down to put my shoes on sometimes. I've heard a couple people mention that works fir them.. I literally bought a bottle today as I remember reading several articles and hearing my friend talk about her daughter who had juvenile arthritis say that aspirin was the only thing that worked for her but arthritis is obviously different. Hope you are getting good care and feeling better. Sorry to hear your story, it's terribly disheartening to hear stories like this where it seems like some doctors need to do a whole lot more for their patients.
I am 67 also and you are telling my story...same thing for me...forget what a pain-free day looks like...depression doesn't help...ugh..infusions now..2nd new drug...does help some...more tests..MRI..and a procedure at hospital for direct infusion into hip...this sucks!!!! Be well
Just diagnosed at 56. I’ve had symptoms for decades but blamed it on other things, doctors dismissed my complaints or honestly didn’t know what to make of it. It took a second round of not being able to walk bc of heel pain for a podiatrist to mention a rheumatologist. Why the GP or orthopedist never did still baffles me. I just started Humira so no relief yet. I feel like I’m 80 years old, I cannot do the things I used to do and when I feel ok I pay for it after being active. Dont be stoic, take matters into your own hands. You know when something is off.
Thanks for sharing. Unfortunately, it is a similar story for many. I'm glad you are being managed now and hope you get significant relief. Thanks again.
@@markbrinson6090 So sorry you’ve found out late and it’s progressed so much already. I feel fortunate to not have much spine damage yet but my muscles & ligaments are so stiff and sore throughout my body limiting motion and activity level. Dr says meds take 4 months to see if any relief. Nothing yet but we have to keep trying. Praying we all find some relief.
i was diagnosed when i was 18, experienced pain for most of my life beforehand, now i’m 20 and take humeria :) before i saw a rheumatologist, i went to orthopedics, chiropractors, pt, acupuncture, etc. it was hard but thank whatever god i finally saw that doctor she’s wonderful edit: more
Hi Milui, sorry to hear about what you had to go through. Thanks for sharing. Hopefully, as people hear your story and we keep advocating to get the message out, things will improve for those with AS. Good luck and I hope you are being looked after now.
I really wish there was a cure for this. I was recently diagnosed with it and I believe it is starting to effect my eyes. Pressure and blurry vision doesn't help
I have people stopped me in the grocery store or different places an asked me what’s wrong with my neck because I can’t look straight ahead. First of all, that’s kind of bold but when I tell them what I have, they have never heard of it. One time I had one person know what it was because they were a doctor. By the time I was diagnosed they told me that any competent doctor could tell that I had ankylosing spondylitis just from a simple x-ray because your spine starts to look like bamboo. Some people even call AS bamboo spine
Thanks for sharing your story. It is often a silent disease as the condition is not visible. Our hope is to keep educating and advocating so that the disease is picked up early and that others to not get to the stage of having a "bamboo" spine.
I was formally diagnosed with Ankylosing Spondylitis when I was 23 but I had been suffering with pain since I was 8 years old. I’m now 39 and I’ve had one major spinal surgery so far. Unfortunately, I’m on the more severe spectrum of the disease and have since been diagnosed with RA and PsA. But with anything in life you must persevere and live life to the fullest because you’re only here for a short time! ❤
Luv your positivity and your outlook. Sounds like it has been a tough time for most of your life dealing with these conditions. Thanks for sharing and helping all of us see the brighter side of things.
I’ve had symptoms not knowing they all tied together. I was maybe 19-20 when I had back and iritis issues. Sciatica was painful. I started working out hard in my late 20’s. It helped but now in my 50’s the bowel issues are a problem. I now have a farm growing my own food from my garden and also raising meat chickens and pigs. My diagnosis is spot on and now a diet is most important. I stay active on my farm. I milk our goats, (goats milk has been amazing for my gut) feed all our animals and tend our 1/4 acre garden. It’s certainly a workout building infrastructure and such. I limit red meat consumption. I had a hard time when I consumed too much. I always thought it was odd that when I tweaked my back a certain way I would get iritis. I hope a natural approach will keep me going as I do not want to take medication. My father had kidney disease (now passed on) so NSAIDs are not really an option. I take them occasionally. Awareness is key. Thank you for sharing.
I was diagnosed with AS by Dr Lau from your clinic in '22 ! I am very lucky to have him. He is very, very thorough, caring and listens. Yes ,it took me about 4-5 days to get the MRI for AS done ,as they have special ways to do it. Beside Sacroiliac joint it included both hips aswell. t Im very lucky to have dr Lau!. However I already had pain in that area for few years prior, but no one paid attention bf I met Dr Lau. Now ,even i have Dg all is new to me bc i didn't know how much is connected with AS .It is very debilitating to live with it. Im definitely in more progressive stage of AS already.
I am 26 and after being diagnosed last year, I have realized I have had these symptoms since I was 12 years old. Maybe younger. One symptom that always stumped me that I could not figure out, was sharp nerve pinching in my hip when I walk. I never heard of this disease until I got recommended to see a rheumatoid doctor from a chiropractor. I have 3 discs that are already partially fused. I am young but I don't see my condition ever getting better.
Thanks for sharing and sorry to hear about the journey that you've had thus far. There is much you can still do the condition. I hope you are working through your management plan with your rheumatologist. Medications to try and targeted exercise to help. Many people have AS and lead very good and active lives. Not sure where you are from but countries like the US, UK and Australia have associations that help people with AS. Perhaps they can provide some support.
It has been a very long journey for me on AS. I have suffered for 36 years before being diagnosed and had 4 lower back surgeries. VERY few doctors appears to know about AS; most importantly, when they do not know what is the source of the problem or one of the problem AS brings, they tend to make the patient believe that he/she creates stories or have to toughen up. No doctors in SO many of my visits has ever said, sorry this is not easy for me to understand, you need to see a rheumatologist, or something similar. Why is it soo difficult for doctors to make referrals to other doctors out there that might have better answers for patients.
Yes, it can be very frustrating and it is a very common theme we hear. Doctors are dealing with so many different conditions and diseases each day and they are just human I guess. Plus AS is just not on the radar as awareness generally is poor. The more we can promote and advocate for people who live with AS, the better things will be......we hope. Thanks again for sharing.
I’m a 40yr old female. I just now got the diagnosis because of MRI. My whole lumbar spine is fused & some of my T-C spine. I just had my first injection of Cimzia. I hope it helps stop the progress and helps with the fatigue. Thanks for the informative video.
@@abdelhalimbouzourine7145 Thank you, unfortunately it didn’t. I developed Lupus and they stopped it, thankfully the Lupus went away about six months after stopping.
Mine wasn't diagnosed too late from a physical perspective, but by the time I did get it I was too depressed and flat to take things seriously or to cultivate a motivation for improvement. Now little has changed- my family seems largely disinterested or unperturbed by my condition, which really id have expected to drive me over the edge, but the more I think about it the more it gives me a bit of a push to fight, purely because I want them to be wrong. I want them to accept that their rules and ultimatums were stupid and damaging to me and this isnt all just my fault But its a tenuous tight rope. Some days I get fired up and motivated, then some days I come scarily close to giving up entirely, and a lot of this was preventable. Like others have said - we need more resources and media coverage for things like this because we could change people's lives with the right proactive decisions, and if we work together we can accomplish more than if we stay spread apart Are there any communities for people suffering from ank spond and similar? Can we make one? 🤔
Thanks for sharing your story. Yes, it is an invisible disease and very frustrating when the people around you just don't get it. I'm glad you have been able to fight and find motivation. You are definitely not alone. I am unsure what country you live in but some have associations for spondyloarthritis or Ankylosing spondylitis. If you are in America, there is creakyjoints.org and spondylitis.org. Here in Australia, Creaky Joints has an Australian office. In the UK, nass.co.uk. Good luck with it all and thanks again for sharing.
I am sad to read your story, I really hope you can find a good Rheumatologist to help you find your way into better quality of life and well being . Demoralisation, is very real, arising from the awful isolation of chronic pain without a name - unfairly attributed too easily to personal weakness and inadequacy- untreated disease allowed to run rampant, inadequately relived disease and suffering, yes all this has risen in me too- feeling hopeless, useless, then helpless, walking away from cherished work, with a creeping loss of meaning and purpose … all this like a black hole drawing me in, …, while trying as hard as I could to keep contributing , giving, working, overcompensating. All too much now. Now is the time for me to let go of that fight, rest more, be kind to myself, heal, care for myself. A diagnosis , even after decades delay, can actually be liberating from the self hatred and others judgements. The kindness and understanding of skilled clinicians, enlisting family support, and the prospect of treatments … all had given me immense hope. There is more to us than our diagnosis, but right care and treatment, allows that ‘ more to us’ the space and care to heal, grow and develop again. I wish you well… don’t give up.. you are not alone….
I had 10 yrs of pain and plantar fasciitis pain and back pain but no one tell me that I had this diagnosis ... it is so late ... I hope this can increase the awareness ...
Yes, your story is such a common one. Thanks for sharing so that the word gets out there about this disease. Hope you are getting better management of your condition now.
started having major back pains at 11 years old. by 13 i was diagnosed with scoliosis. by 14 i had an arachnoid cyst removal from my spine. by 15, the pain was back and even worse (knee, wrists, hips, etc). i went from 5’7 to 5’4. plenty of MRI’s and told that i’m fine. got an ANA test at 16 that was positive. i was sent to rheumatology, one x-ray of my SI joints told them i had spondyloarthropothy. quite devastating knowing that i was in pain for so many years and just now finding answers whilst getting worse and worse each day.
Diagnosed about 2years later after I had the symptoms. Now, I am 30years old, and 6 years passed. Before I had an operation at end of the spine. Later, I always feel painful even the doctor checked and told me, the operation was successful and recovery well. However I always think the painful is caused by the operation, and went to many hospital to check my spine, did X-ray, MRI, all doctors made the wrong diagnose. What a Disappointed,. Finally, meet a doctor who listened my symptom, and suggested me to do BL-27, and go to see another doctor, the result shows positive, and I did CT, then it's diagnosed. I have to see all depends on if you can meet the right doctor. After diagnosed, I am anxious so much, and complain why it happened to me. Months later, I accept it, and feel lucky to be diagnosed so early, and disease is controlled.
I started exhibiting symptoms of AS in my early 20's. I wasn't diagnosed until I was 48. By that time I only had 1 good hip and a few toes that were not inflamed. My life has been hell physically. I'm on Humira, but still deal with flares in joints and my eyes. I'm terrified of what my future hold.
Same with me, 20 years in pain, I take medications I can't handle the pain without, the stress was so bad by not been Able to sleep I was diagnosed with a generalized stress disorder, I was so sick with pain I had to stop working , I'm going to stop hear because I don't want to relive the hell I went thru not been able to work and no money and go thru the hell with family and doctors, and clients that lost patience, like Bob Marley said in a song who feels it knows, the rest get bored or tired. I learned to meditate that helps a lot, listen to music, and play in my garden,
I have had AS since I was 23 I'm now 58 it wasn't diagnosed until I was 52 so it took a lot out of me my neck is cocked to the right hands won't open or close and the pain is very bad been given every medication they have for this disease
Been to all the doctors (rheumatologists included) and they literally laughed in my face cause I wasn’t in a wheel chair. It’s now been 10 years of chronic pain and I’ve yet to get a useful diagnosis - I was told I have fibromyalgia and at that point they completely stopped trying to do anything useful for me. I’m in my twenties and don’t want to live anymore because if this pain. My body is extremely stiff and I’ve got the lower back pain and plantar fasciitis. In the past I did physical therapy which was helpful and I’d like to start exercising more again but at the moment my pain is so unbearable I feel hopeless. If a single physician had taken my pain seriously I wouldn’t have spent a decade suffering. I would have a solution by now, even if that meant painful exercise I would be much more willing to do it and maintain it if I knew this danger of irreversible damage from AS. I’m disgusted that the only course of action left for me would be to keep begging doctors to re check, re test, etc but I refuse to experience that trauma again. Every time test results came back negative or there was something a bit off but it didn’t lead to anything. How can anyone reach out for help after a decade of this? Years and years and every time you are denied help. Even if I truly only have “fibromyalgia” I would still require some form of guidance but I never did.
20 years of AS. Only diagnosed about 10 years ago. Irreversible damage is done. Lots of bone spurs. No range of cervical spine n totally fused. Bilateral SI joints also fused. Planters fasciitis. It's incredibly painful. Representing myself in my redetermination case for Disabilty next month n hoping I get to keep my little check. I'm on SSI Edit to say I am HLA- B27 negative. 43 yr old female
Thanks for sharing and sorry to hear your tough journey with this condition. Hopefully, those that need help more readily will read stories like yours and seek the right advice. It can be incredibly debilitating. I also hope that you have found management that can help some of your symptoms. Thanks again for sharing and good luck.
I spent years suffering back pain and sciatica, despite many visits to my GP and visits to A and E and numerous X-rays i was diagnosed with muscle pain/sciatica and osteoarthritis.It was only when a new doctor started at our surgery and sent me for a specific blood test that i was diagnosed as carrying the HLA B27 gene which i was told is an indicator of AS. After further tests this was confirmed and i was put on Diclofenac, this seemed to help for a couple of years until a blood test showed that my kidney function was failing rapidly so i was barred from taking any anti inflammatory meds.I was basically back to square 1, lots of pain, loss of appetite and bowel problems. Eventually i was accepted on the Humira program, i have been using Humira for 10 years now and it has improved my life considerably. However because of the lack of diagnosis over many years i have been left with a severely bent spine and have lost 4 inches in height so diagnosis as soon as possible is crucial.
Hi Stan, really appreciate you sharing your story. I'm glad to hear that you were finally able to get some relief and care you deserved but of course disappointed it took so long to occur. That's why we try to get this message out so that we can help lessen the number of stories like yours. Once again, thank you for sharing.
Sounds very similar to my experience too but with a central disc protrusion throwing the doctors off. It’s only because of orthopaedic doctor asking for hip ct scan that showed SI joints with significant ankylosis that I have a AS diagnosis but now awaiting what is going to happen next
Anti inflammatory diet, cut dairy and gluten.. it sounds impossible, but if you make small changes and get some good recipe books, you'll improve things! I've just been given a diagnosis of spondylitis and psoratic arthritis :/ i was treated for cauda equina 5 years ago.. been in severe pain the past 8 years, no work, etc. I'm starting biologics this week. I hope they work. My spine is sore all over, limited movement in my neck.. pain in my foot, knee, wrist, elbow, and along my sternum.. It's been intense, but after cutting out a few food groups, I've noticed an improvement.. not massive, but maybe in time it will be.. there are loads of positive stories out there, just need to find them and create them! Wishing everyone healing ♡
@BJC Health ah thank you, and thank you for taking the time to share your knowledge. It's been really, really, really helpful. I look forward to watching more videos and learning as much as possible and hopefully conquering it all :)
@@aoifebee780 Glad to hear and thanks for your support. We will continue to advocate for better care and comments such as yours do give us further motivation.
Started feeling symptoms at 18 yrs old. At 27, my job threatened to fire me because I was a risk to coworkers. Went to the doctor, bitched him out for feeding me ibuprofen for 9 yrs. He then ran test, xrays, etc and 2 days later I was diagnosed. I am fused from pelvis to head. Cant turn my head and spine is curved already. Sucks
Hi Steven, sorry to hear about your situation. And yes, it sucks. Thank you for sharing so that more people can learn from your story and be informed. In so doing, hopefully push for answers to get to a diagnosis. I hope you now have a regiment of exercises and the right meds to at least help maintain what you have and make you stronger. Thanks again and good luck.
So, so good to hear an Aussie accent, talking about AS here on TH-cam. I am a late and constantly changing dx. While I was dxed with AS almost a decade ago, every time I come across another Rheumy the dx seems to change. That or they just won't commit, they just call it some kind of Inflammatory arthritis. OK, admittedly I have more that one systemic condition that directly affects the joints, which seems to confound the issue. Apparently I am also a very complex patient. My take on that is shitty gene's, ha ha. I am female, 50 something, B27 negative, RF negative, ANA positive. I have a relative, my mothers uncle, who had AS. I also have plenty of relatives with RA. Fortunately I have been on DMARD's the whole time. I have tried a biologic but I kept getting stomach infections. My Rheumy at the time told me that if I couldn't tolerate one biologic I couldn't tolerate any of them. I also hvae a standing order for rule 3 testing which I get any time I have another blood test done. No one seems to be monitoring them so I don't worry too much. I have had imaging of my lungs and lung function tests, the results of the LFT wasn't good news. As I live in a small country town (in NSW|) and am a waaay too frequent, frequent flyer at my local imaging place. Lets just say the guy who reports on my imaging is always the same guy and he isn't overly concerned with being accurate. It's OK if the specialists actually view the imaging but because I am complex, most of the time there is no time for that. They just take the report as gospel. I have had 3 surgeries on my spine so far. 2 on my Lumbar/sacral spine and just recently a big Neurosurgery in my C spine. After my second dose of Pfizer vax back in September 2021 I went into the worst flair I have ever experienced. I am still stuck in that flair. I had a CT recently, couldn't have a MRI because I have metal fixings in my neck. It showed allot of degenerative changes in the places AS typically attacks, the spine and Enthesis's. Of course the imaging reports call the degeneration in the spine DISH Any way I have a question or 2 for you. Can DISH on imaging be mistaken for AS? In relation to Biologics, is it true that if side effects from biologics happen with one biologic it will happen with all of them? Then following on from the last question ( I know some one with Lupus, who was put on IVIG because of constant infections caused by a biologic she was on) Would that ever be an option for some one with AS especially if their condition is being poorly controlled just on DMARD's?
Unfortunately, that is about the average time to get a diagnosis. Thank you for sharing and hopefully together we can reduce the time for people to get the right diagnosis and get the appropriate treatments.
Seems like I have the same symptoms you do other than the blood clots but there's in my head terrified to leave the house blind from very active job raising children and grandchildren volunteering having my horse boarding my horse we don't see her anymore no one wants people like me
Sorry to hear your story Eric. Unfortunate blight on our system and the lack of education around this disease and other related ones. Thanks for sharing and for helping advocate for others. This is the best we can do to aid more people.
@@user-fw3fq3de3z Hopefully AS and other rheumatic conditions will be highlighted more in the public's eye so that we can help more people. Again, thank you for sharing.
I’m HLA B27 positive searching for diagnosis of cause of my severe chronic pain for over 20 years now. My L4-L5 has bone spurs, scoliosis and degenerate disc. This was on X-ray only at 44 years old. I’ve also had anterior and posterior uveitis with branch retinal artery occlusion with hemorrhage. I’ve seen a rheumatologist but without the sacroiliac joint involvement and negative ANA and a normal set rate I’m sent home with no treatment and no diagnosis aside from fibromyalgia. My quality of life is severely impacted. I’m 47 now. I’ve suffered severe IBS since birth. I don’t know where to turn. I’ve spent so much money and testing over so many years to constantly hear I have certainly have so much wrong but no specific answers. I have had varying flares of so many different symptoms over the past IDK 25 years now. Any suggestions for what to do next would be very much appreciated. I’m just so tired of living with chronic pain and health problems. A diagnosis of anything that would finally make sense and allow me hope or at least understanding would be very welcomed! Are there any Rheumatologist’s willing to look at symptoms and enough clinical support that maybe doesn’t exactly fit diagnostic criteria that are willing to treat for quality of life for their patients?
It's of course not really possible, and inappropriate, for us to try and give diagnoses and personal advice through TH-cam. I am sorry you are having so much discomfort. As general advice: Ankylosing Spondylitis and/or Axial Spondyloarthritis can be objectively diagnosed either through Xray abnormalities, CT scan abnormalities of the sacroiliac joints or MRI abnormalities showing inflammation (osteitis) and/or erosive changes at the sacroiliac joints. If all of these tests are negative, it would be hard to attribute the pain to these conditions.
Find a great Colon cleanser, I founded www.mycoloncleaner.com after breaking my tailbone, with A.S. and IBS (past)...Don't give up... Get 35 grams of Fiber daily. Helps so much, I use a Thermal heating pad for pain and Tylenol Arthritis... I took ALL of the heavy hitters...I can live safely on non narcotic meds and Yoga. Godspeed your comfort!🌺
Christie, where do you live- if in Australia, ask your GP for a referral to a Rheumatologist, and dare I state it, maybe a ‘ youngish’ Rheumatologist may possibly be more open to hearing your story with an open and well informed mind, and also may be more open to some of the newer treatments if the regular ones don’t work well for you. Our Australian health system is amongst the best when you have the right fit between Dr, disease, and patient. The use of telehealth after the initial in depth consultation makes even geographical isolation less onerous ( and painful journeys less often) . If you live outside Australia, maybe enquire at local Arthritis Foundations or if there is an AS interest group for clinicians and patients. Don’t give up… persist to find your way forward. Good luck
Thanks for sharing. Sorry to hear that is has been so hard. Hope you can try to stay positive about what you can do and aim for tiny gains. Thanks again.
@@bjchealthAU Thank you very much. I do the best I can and try not to beat myself up over things I no longer can do. I am currently on Remicade and have noticed improvement on stiffness. I exercise everyday, which is challenging, but it does help. I hope in the future patients are diagnosed much sooner. That is why videos like this are so good. We need to raise awareness on so many diseases. Thank you!
I really think I might have AS. Unfortunately I cannot afford to get checked out by a doctor. I don’t even have a doctor. I’m in tears as I write this, I’m so fed up being in pain for almost 10 years. Stiff pain in my back and shoulders that’s worse when I wake up, random pain that hits my buttocks and legs and feet, having to sleep with cushions under my legs and take OTC pain pills every single night just to get some comfort. But even that’s not enough now. I don’t know what to do. I need to be checked out but cannot afford it so I continue to suffer... I’m only 31, I can’t imagine continuing to live like this. :(
miss rose I’m sorry to hear about your situation. It is really tough when you can’t seek the care you need. It does take a doctor to diagnose such a condition. There are however, helpful websites. Please have a look at nass.co.uk and arthritisaustralia.com.au/types-of-arthritis/ankylosing-spondylitis/ I hope you can get some helpful information that can be a start for you.
So sorry to read some of the experiences people have had in getting diagnosed and living with AS. Ive been diagnosed recently. I appear to be extremely lucky that Ive had only two to three years of pain. I'm 36 years old. I have been seeing the chiropractor in that time which has helped in some ways made things worse in others I've seen the Physio and my GP. After no real diagnosis in two or so years to all of a sudden the GP and the Physio both pulling out the Ankylosing Spondylitis card in the same week. Had the gene test (to which I'm positive) and MRIs My spine is actually looking pretty good ATM but SI joints have medium to severe inflammation. Left more than the right. Since the I have gone hard with an anti inflammatory diet. Cut sugar, wheat/ grains and red meat. I take Turpentines daily. - raw phytoplankton - milk thistle - Black cumin oil, black sesame oil . Bio ready vitamins / perfect iodine. Daily apple - carrot celery and ginger smoothy with coconut water. And Naproxen. Not sure how all the natural stuff is working but it can't hurt! The Daily dose of Naproxen is probably biggest help. I see the specialist on the 3rd of December for a treatment schedule.
Nice comment Joe. Thanks for sharing your story. It's good to know you are being looked after and you are doing things to help with your symptoms. Well done for taking charge and trying to understand your body and what works well. Keep it up!
@@SaturatedCat processed/ unprocessed . I eat Red meat and I get gut pains. I don't eat it- don't get the issues Its a closed case for me man and I'm perfectly happy without I.
@@SaturatedCat thankyou for taking the time to reply. Mate that's sounds pretty rough. I've been cranking product from Activation Products. Will see what happens long term. Thanks again my friend and all the best. I hear celery juice solves every problem in the known universe so Ill give that a crack too 😀
Diagnosed after a time complaining about stiff ankles that took to long to get better, than a hand and neck. So my doctor sended me to a rheumatologist he took blood, asked so many questions and diagnosed SA, he started up my meds I used to take for my Crohn’s after a time it got worse because I worked as a nurse aid at peoples home. Did had to get lesser hours to work, one day a get a nasty fall at a patience home, the medical council for the insurance claimed look it has nothing to do with you falling and holding yourself up but your illness, my rheumatologist said is she out of her mind, you didn’t have any problem halfway your back, it where your ankles, neck and shoulder later on your lower back! She’s not even qualified for this matter of illness. It got worse so asked my firm to find me an other position but they said sorry not with us, can’t even follow a retraining for different job unless I resign. What means no income. So my rheumatologist put me at home, if they sack me it cost them a lot because they refuse to give me different work or let me go back to school. I’m 53 now and some medical counseling said look stay home, you’re to old for the workforce after retraining and you’re illness will not help you find a job. And they will not pull away you’re status as nurse aid with skills in palliative care, dementia and counseling in difficult households. To much value for that sector. So picked up my hobby dogs and crafts. My kids are young adults one is out the house and son still at home but helps out, a husband that does the heavy shores. We managen well, many others aren’t that lucky. I often tell if you feel something’s not adding up, push for answers, if doctors don’t listen make a fuss and ask second opinion they will listen because often don’t want to loose patients or have to send you further on.
So thank you to all the crappy doctors who told me it was everything from a pinched nerve to just muscle strain.....I have the gene and its positive....I suffer my son has it and my sister has it my aunt has it and my mother mom had it....its GENETIC
It is hard to diagnose at times as the symptoms can sometimes be vague. It is definitely a condition that is linked to the gene that you refer to but there are people who can have AS without having the gene. Hope you and your family are managing things well. Good luck.
As far as I can find out, and I've tried, no-one else in my family or ancestry ever had AS. At the beginning (55 yrs ago !) I had all kinds of diagnosis including misaligned joints, muscle strain... even (at 18) growing pains ! Even now, I think an AS diagnosis can take a few years. With me it took 5 years.
I am so glad to see more is being shared , better info on AS. I too found a terrific Rheumatologist who carefully listened, investigated and diagnosed me with Axial Spond at nearly 67y - after 45 yrs of miserable pains and deep fatigue. I wish I could forget the shame and humiliation I felt as a young and middle aged woman when my symptoms and suffering were repeatedly trivialised, normalised, and largely diminished by ignorant doctors . I wasted thousands on Chiropractors, Osteopaths, naturopaths, physios, and radiology examinations , and so many Drs… I learnt to be silent about my suffering, and to develop deep compassion for my life and for others. It led me on an amazing and uplifting path of professional service to others. But the cost of unrecognised and inadequately treated AS has been a huge and wide burden to carry alone. I am so grateful that a series of synchronicities led me to my Doctor. I cry with relief at being believed, being seen and understood. About to commence biologics I now have hope for my future . I found tai chi and walking really can’t tell you how sad I feel for all of us - but just know there are ways forward. I am eager for my future for the first time in decades, many decades. I can’t help but wonder had I been a young man with my symptoms I would have been diagnosed in my teens ir twenties. I still hear stories from health care colleagues where Drs don’t look fir AS in women - and see their pain automatically as ‘ in their mind’, depression related, attention seeking, malingering, drug seeking, hysterical. It’s an awful disease , but hideous when not diagnosed or managed early and well. There should be more research and education , like this you tube- fir which I am very appreciative
Yes.. there comes a time to speak up - after decades of quiet desperation. Why is it that even some physicians seem stuck in the rhetoric of their medical schools or teachers’ views from decades earlier . I am so glad to see the video. Only 2 months ago I sought help from ED on a Sunday, having not slept for days , in agony, with mixtures of inflammatory, mechanical and neuropathic pains in my neck and shoulders and lower back and hips, a highly respected physician stood over me , MRI report in hand, unwilling to show me the results, cruelly lied, saying ‘ there is nothing on the scan, just old age, you just have to put up with it’. This was with nerve root compressions , obvious multiple tendon inflammations and sacro-ileitis . The contrast between his lack of care ( maybe arrogance) and my Rheumatologist’s Knowledge and attitudes is astounding. So much avoidable suffering if only you could get the education out there to the GPS, the Registrars, the Physios, then we could bypass those who don’t want to open their minds and hearts to the possibility of AS diagnosis in older patients.
@@firefly5574 yes, your narrative is unfortunately so common. The best we can do is keep advocating and hopefully things will change slowly. Rheumatic disease is unfortunately a group of silent diseases which people who aren't sufferers can't see and hence does not evoke the same urgency as other conditions nor does it get the same government funding typically. We know consistent education over and over again will lead to some change. It may take years. Your story will help us keep driving forward. Thank you.
Thank you for your kindness, understanding and willingness to advocate for all of us. I do appreciate your level of care and professionalism. Thank you very much.
Yep, I get that…. Sometimes I just don’t want to know either… but this is what I wish for you : Courage and kindness to your self first… then persistence in getting what you need - empowering you to get adequate and updated information, greater understanding of your treatment options and relatively newly available opportunities to reduce inflammation , keep mobile- all aiming to either stop or reduce the rate progress of disease , with the end game that you have your life - rather than the disease having and controlling your life…
25 years and now almost completely blind because of treatments and surgery at this moment I can hardly breath I’m in so much pain. A very old and wonderful specialist looked at me and said I know just what’s wrong with you….. he wanted to hand pick a rheumatologist for me….the rheumatologist a young once student of the older man spent more time declaring that the old Dr was a dinosaur that should have been retired long ago and didn’t know what he was talking about, I was a white female it was probably osteoarthritis and put me on Humira. I said you don’t understand and explained my history. Pretty much disregarded me. I took the shot for a year. Started having other issues with my skin so I quit taking it. To many pills to many creams salves shots and even in the beginning chemo pills to slow it down… to many bills and apts no answers no help. So here I am having a pretty bad flare up and days covered in lidocaine patches and Tylenol can hardly breath and hips 😢. If someone had bothered to look beyond my eyes to the root years ago.
Almost a decade ago a rheumatologist told me I have AS and that it would only get worse for me. I was there for a lupus test and then was diagnosed with breast cancer. He never made any notes about it since it wasn’t why I was there and no one has ever mentioned it again. But I was busy fighting cancer and am in chronic pain so I don’t know if it’s anything I should ever bring up to my medical team or just wait until it gets noticed again, if ever, lol
Thanks for sharing your tough journey and well done for getting through it. Please get it all checked out again with your rheumatologist. I am hopeful they can help. Good luck.
could i ask you a question i have very very severe ankylosing spondylitis and i have for nearly 18 years since june 2006 and i am really concerned about both premature death and cancer should i prepare to die very young my name is Peter McGarry from galway ireland i got it when i was 20 i am now nearly 38 what should i i do i also have Cerebral Palsy too
Hello Peter, I'm truly sorry to hear about the challenges you've been facing with ankylosing spondylitis (AS) and cerebral palsy. It's understandable to have concerns about your health and future, especially when dealing with chronic conditions. I'll provide some general information that may help address your concerns, but please remember, it's important to have these conversations with your healthcare providers, who can offer advice tailored to your specific situation. Firstly, when it comes to ankylosing spondylitis, advancements in treatment have significantly improved the quality of life for many people living with this condition. While AS can be associated with certain complications and comorbidities, such as cardiovascular disease or increased inflammation that might slightly elevate the risk of some cancers, it's important to note that many people with AS lead full, active lives. The management of AS has evolved over the years, especially with the introduction of biologic therapies, which have been a game-changer for many patients. These treatments can help manage symptoms, reduce inflammation, and potentially slow the progression of the disease. It's crucial to work closely with a rheumatologist experienced in treating AS to find the most effective treatment plan for you. They can also monitor for any potential complications associated with the disease or its treatment. Regarding your concern about premature death and cancer, it's key to focus on regular medical check-ups, not just for your AS but for general health screening. This includes monitoring for signs of potential complications and engaging in preventive health measures, such as a heart-healthy diet, regular physical activity tailored to your abilities, and avoiding smoking. Living with cerebral palsy alongside AS undoubtedly adds an extra layer of complexity to your health management, but multidisciplinary care involving specialists in both conditions can provide comprehensive support. This might include physical therapy, pain management strategies, and possibly adjustments to your treatment plan to address both conditions effectively. On a personal level, focusing on your mental health is equally important. Living with chronic conditions can be challenging, and seeking support-whether through counseling, support groups, or connecting with others facing similar challenges-can be beneficial. In summary, while your concerns are valid, there are steps you can take to manage your health proactively. It's crucial to stay engaged with your healthcare team, discuss any changes in your condition or concerns you have, and explore all available treatment options. Your healthcare providers can offer the most personalized advice based on your medical history, current health status, and the latest research. Please remember, my response is based on general information, and it's important to consult your healthcare providers for advice specific to your situation.
I had a useless doctor who would just give me meds to mask the pain. It was 5 years till I said enough's enough. It was by chance the doctor that wrote out the report on a blood test for something unrelated commented saying that I had the hla-b27 marker possibility of AS. The GP idiot had to google up AS to then tell me what google. Turned out my AS had progressed to stage 3 with irreversible damage. It had impacted on my career, marriage breakdown, quality of life, and self esteem. I still don't know if I should sue his ass, I mean it was really bad before I started taking the biomeds.
By the way..... NEVER allow this disease to define who you are!! That alone, make a huge difference and prevents depression from destroying your life. I refuse to let this beat me!!
I've had AS for 55 years. Although I've fought against it every inch of the way, I suppose it's defined me, in that only a certain kind of lifestyle is possible. At 17, I was very athletic and good at gymnastics. That went right out the window (except for swimming). I've had no children. I wouldn't want them to inherit the disease and suffer the way that I have. I'm an artist, (which does define me)..so that suits my condition. Although it may not have defined me, it's certainly guided me in one direction or another, through my life.
My symptoms began at 13. I waa athletic, a dancer, ate healthy and still it changed my life for the worse. I'm 53 I was diagnosed only 9 years ago when even the least skilled Dr could have diagnosed me. Decades of the medi al gaslighting me and putting me on antidepressants has alsi done damage to my trust. I have a great dr now I actually get the pain pills etc. I should have had long ago. Humira and antidepressants EVERYTHING has side effects or dependence issues and many thing I clouding no pain control can lead to addiction. My quality of life in my 50s is better than at 20 because my dr doesn't treat me like a druggie or " just" depressed.
Hi Paul, yes it is terribly frustrating and is something we hear all the time. The more we can get the message out, hopefully the more awareness there will be about the disease and it's possible effects.
I was diagnosed with Ankylosing Spondylitis in 2005, from MRI, by a NeuroSurgeon. The pain was so bad by then, he put me on Morphine, as I had been on Vioxx, NSAIDS, etc. The pain is debilitating. Getting out of bed, in the morning, is difficult, even after completing spinal stretching, rib stretching, etc. Now, my spine is broken in 2 places, severe IBS, Costochronditis, 2 Spinal herniation, and spinal stenosis, and 4 pelvic breaks. Frustration, to say the least. Oh....and my B27 is positive. Oh yeah. The rib pain I am experiencing, now.....Lord help me. My lower ribs, front and back, left sternum pain is horrific. My current doctor has run blood tests, urine, X-Ray, EKG, and heart monitor for 2 weeks. Thoracic MRI is next.
Have you seen Rheumatologist - so many new medications available over the past few yrs , and if in Australia and if you meet clinical criteria ( and have exhausted the many previously available treatments) you may be eligible for biologics…
Thanks for sharing, Dr Irwin I'm from Melbourne, luv your vids. so frustrated and disappointed tried to book an app with you earlier and was told that I have to for over 6-7 months. I tried to explain my conditions to the admin lady but wasn't really helpful. I was happy to travel to Sydney meet with you or even a telehealth. I'm a young man have young family, can't really work or spend quality time with my kids and family. My health isn't improving, I was put on RINVOQ 15mg which worked at the beginning but all of the sudden stopped working, not sure why. I'd really need it if we can at least organise a telehealth and maybe consider a new biologic. Would love to hear from you soon. Thnx
Hi Kal, I'm sorry to hear your frustrations. Many of our patients are in a similar situation. Our rheumatologists are all very good and have particular expertise with AS. I have spoken to our reception team and they are offering our patients the chance to see other doctors much sooner. This is the best we can do without bumping someone else. I hope you can understand. I also see that you are on RINVOQ which means you have a treating physician already. I would suggest going to see them again and explaining the situation you are in. Melbourne has excellent rheumatologists as well. Good luck Kal. Regards, Errol Lim (Managing Director)
Im 53, a few years ago I was diagnosed with AS after a locum doctor suggested that might be wgat I have just from looking at my crooked neck, the hospital confirmed that was the case. Knowing what I know now, I was at stage 3 then with the whole of my spinal column and neck completely frozen with no head movement. Ive read that at severe cases it can effect other organs including kidneys. Several times over the past 4 years very occasionally Id pee blood. This year, I have been peeing blood more regular, and recently I have been peeing congealed blood with my pee. I have no friends, lost them all because they have all moved away. Because of my clinical depression, social anxiety and pain I never got a new social group, been totally on my own/ My 2 cats I know have kept me going. I havnt had the blood in my pee checked out because I cant get to the doctors early in the morning as I feel too ill when I wake up, and the hospital is too far for me to travel on public transport or taxi, I feel so ill when traveling. Im worried my kidneys are possibly packing up or I may have bladder cancer. I never went for any possible treatments earlier because if I need a stay in hospital id have to get rid of my cats, and they have only ever known me, and I know they have saved my like from depressions and give me a purpose to get up most days. I now things have now got serious, dont know what to do because I cant get to hospitals, and the pain I experience from my AS stops me going to hospitals etc, I just wouldnt be able to handle it. My cats are 10 and 7, I dont know who is going to last the longest me or them. I worry for my self and what will happen if I have to stay in hospital, eventually I fear there in the near future I will have to go to hospital and and wont come out, what will happen to my babies. I know I wont reach 60, Im at a total loss, Im totally stuck, I have no help, I dont know how to get help because im house bound. I live in London UK. This is the first time I have told any one about this. Sorry for the long winded babble.
I'm sorry to hear about your situation but thank you for sharing and your courage. Not sure how much we can help here but I would like to point you to nass.co.uk They have a helpline and since they are UK based, they may be able to provide you with some advice and better support.
i just diagnosed with AS, HLAB27. i am only having pain in sacroiliitis joint spine and hip joint x ray is normal Only MRI of sacroiliitis shows inflammation in muscle. The good thing is i am in very early stage with very least pain. suggest me what to do Now to not form the bamboo spine forever. swimming could be best i am doing anything else.
Thanks for sharing Rupesh. Keeping mobile is the key and keeping the inflammation at bay. I would suggest continuing to see your rheumatologist so that the both of you can decide on the appropriate medication to be on. In the interim, maintain flexibility through your neck, upper/lower back and hips with exercises. We've created a playlist here of the gold standard movement tests for AS - th-cam.com/video/B9RaFB5BwrQ/w-d-xo.html. Whichever movement you feel is stiffer is the one you should work on. As part of a general exercise program for AS, you should also consider doing some strength based exercises as well as some aerobic exercise (eg. swimming is good for this component of exercise). Hope that helps.
@@bjchealthAU thanks for replying and the main thing I suffer in this disease is mental health overthinking makes me like I am the unluckiest person why this is happen and all hu now I am good. Agin thanks for this playlist.
@@_rupeshchauhan acknowledging how you feel is the most important so you've done that. Well done. Hopefully, you can turn your feelings to being positive ones as many people do really well even though they have AS. If you follow cricket, big names that have played in the past have AS - Michael Atherton & Michael Slater. Well publicised. So, much to look forward to. Keep active and keep discussing things with your healthcare team. Good luck.
I have a question regarding AS. is there any sign or changes in our back during development phase of bamboo spine? If there is any how can I prevent it. I don't want to enter in this stage can you please help me.
@@_rupeshchauhan In this day and age, if you get the appropriate management (drug therapy & exercise) and are regularly followed up by your physicians, then bamboo spine is definitely preventable. Your symptoms and the mobility assessment I shared with you are good ways to make sure you stay mobile. A physician may send you for a specific MRI to check if you have inflammation at the SIJ (sacroiliac joints) but again this has to be matched to your symptoms and how you are moving. Waiting to see changes on X-rays means that the extra bone formation has already occurred. Hope that helps a little.
@@marilynfourie2651 hopefully you are being seen by the rheumatology department there. I am hopeful they will do the best they can. Thanks again for sharing.
Is there a more recent follow up video that describes the role and availability of some of the newer biologics? It would be great if it followed on from this one here, which is a very helpful video
We don't know of a follow up video that describes the huge array of biologics and specialised DMARDs. Our friends at CreakyJoints have attempted to collate some information on their site and in particular, there is a great patient guide with a section of these agents - creakyjoints.org.au/pg-axspa/ Hope this helps.
Excellent link: Just read the AS Ebook on the Creaky Joints site. Really useful information, easily accessible, with enough detail. Much appreciated - thank you very much
Maybe see a Rheumatologist. Sometimes chronic pain and insomnia can also contribute to another weird and painful and much misunderstood condition fibromyalgia ( which can lead to awfully tender spots scattered across the body) . but I also wonder if inadequately treated, chronic unrelieved pains, from AS , could lead to a strange wind-up of pain pathways where light touch gets recruited into the pain pathway? And, I wonder, is it actual AS inflammation in those tendons you are feeling? … or does actual muscle pain and inflammation occur across the connective tissue network across the surface of the muscle somehow gets inflamed too. I know I have the same awful tenderness, can’t tolerate the discomfort of firm massage only on my legs . I don’t understand it either. But real it is… I get so embarrassed by the myriads of physical complaints , that I still keep quiet about the breadth and level of pain and suffering I experience. But, we are no longer alone in our suffering…
I am suffering from joints pains from the age of 14, at age of 27 i was diagnosed AS but it was too late, my left hips is freezed, my spine is like a rod, my both knees joint space reduced. Both of eyes suffered with severe Uvitis, and now inflammatory Bowel is active. I am really frustrated from my difficulties
I'm sorry to hear how difficult it has been for you. I hope you are still able to get some management to help you a little and make things a little more comfortable. That you for sharing your story and reminding us about the importance of early diagnosis.
I had to stop at 1:53, it's taken me 30 freaking years to get a punctilious diagnosis. I cannot tell you how much pain emotionally, socially let alone physically I have gone through... on my own... It's funny that I had my diagnosis with a rheumatologist who put my case before a panel of rheumatologists only to be told it may have been a congenital condition, that it wasn't inflammatory and that there was nothing more they could do for me... at least I can still touch my toes.
@Brett Perryman I was wondering, do you have issues with the muscles along both sides of your spine super stiff? I am trying to get someone to listen to me about this. I had an orthopedic doc tell me ( my back) was a huge mess and there was nothing that could be done for me. I cannot stand for more than 5 minutes on a hard surface, I lean a little to the right to take pressure off, because i have issues with my SI joints. I do have seronegative Rheumatoid Arthritis. This pain in my back has been unbearable for 17 years. I also have the neck issues. Surgery on that last year. I cannot sit on my butt flat either. Have you experienced any of this? Thanks. I am at a dead end.
@@Justagirlnamedshawn I have trouble with stiffness quite a lot, however on a psychosomatic level its hard to separate from being old or just general stiffness. I try not to let my reaction amplify my experience, so I try to take a dualistic state and just let it happen. Stiffening against the pain can be just as bad as the pain. So, relax into it, its counter intuitive I know, but its the best path
Misdiagnosed misunderstood. Severe pain. My life is over. I have autonomic failure and multiple fused back. I cannot walk I have heart failure. I have paralyzed stomach. I have no king to live. It doesn’t just attack the spine. I have children I hope they don’t feel this!!!!!!!
Heya, I’m 25 and discovered a fused disk when I was around 13. The spine doctors were perplexed, and never mentioned AS. They didn’t recommend a rheumatologist either. I’m wondering if it is AS. Is this possible? Apparently I went to the best spine doctors in LA. Is this a newly characterized disease or something?
Hi Michael, it is not a newly characterised disease. It's been around for a long time. Unfortunately, it is still misdiagnosed throughout the world as it is not something that many clinicians think about. It is hard to say that you have AS just from what you have written. The criteria for AS typically looks at the sacroiliac joints (SIJs) and if these are fused then there is correlation here. Symptoms of AS are typically stiffness in the mornings, pain at night, symptoms improving with activity/exercise and hence worsen with rest, and buttock pain that can alternate from side to side. The main specialist that you should see if there is suspicion of AS is a rheumatologist. Hope that helps. Thanks for sharing.
I can't believe how this condition can go misdiagnosed for so long by multiple Doctor's. Can AS, effect your prostate with systemic inflammation? Thank you.
I’m wondering if I have this. I have stiffness on my left side back and my left hip hurts. The pain is bad around 3-4 am and wakes me up. It might take hours to get back to sleep. When I get up and move around it’s starts feeling better. It’s been 3 1/2 years of this and seems to be worsening. I thought it was piriformis syndrome from all the running I do but the stiff left side back doesn’t make sense w that. I’ve taken a break from running but it’s still hurting at night.
Hi Christine, thanks for sharing and for your question. You seem to have signs and symptoms of inflammation. I would recommend seeing a doctor and preferably a rheumatologist to make the diagnosis or re-assure you that you don't have AS. Here's a simple symptom screener that may just help a little bit more - dontturnyourbackonit.com.au/symptom-screener.html
@@bjchealthAU thank you’re your response. Yes I have a GP appointment coming up and I’m asking for a referral and an mri so they can actually look in there. About 2 years ago my back locked up on me and left me hunched over for one week! This happened after driving for 8 hours. I was on a trip so I had to go to an urgent care clinic. They gave a shot in the butt, ibprofren and a muscle relaxer, none of which helped much. I’ve had episodes like this one maybe three other times in my life. Something is going on in there.
@@christine9467 Actually, you can have acute back pain episodes and have nothing showing on MRI. People get back pain for many different reasons and it doesn't have to be pathological. Seeing health professionals that appreciate this is critical. Good luck with it all. Whatever it is, I hope you get the rehab you deserve. Be positive and there are plenty of reasons why you should get back to what you love to do.
@@moniquefacey5760 I’m actually doing better now. I chickened out on going to my doctor because it was a new one. My husband had gone and he said she was really good so I rescheduled for February 🤦🏼♀️. But…I recently started going to our neighborhood workout room and started working out on the elliptical machine and my hip is starting to feel better. I’ve even laid on it a couple of times!!! Someone on another thread said I may have a tight IT band 🤷🏼♀️. So I’m going to continue with the elliptical and stop the running. Every time I go run, that hip flares up. So maybe I don’t have this condition hopefully. I will mention this problem to my doc when I do go this time. I hope you get some relief and find the solution. It’s so tough cuz there are just many muscles and nerves that it makes it super hard to combat the problem.
Hi Emma, sorry to hear about your situation but unfortunately, we are in Australia. However, the National Axial Spondyloarthritis Society (NASS) is very proactive in the UK and have great information on their site - nass.co.uk. If you contact them, I am sure they will be able to point you in the right direction. Good luck.
you got that right Doc! had been to every doctor that you mentioned. let's not forget the the ones in between the call you a crazy person and you couldn't be in the kind of pain you're saying blah blah blah. I'm in the neurosurgeon to tell you need Fusion in your neck and your lumbar I chose not to do it thank God did not know I had this at the time! longer story short I was not diagnosed until after all my research took me to a top rheumatologist now I have been to two rheumatologist prior one said fibromyalgia like I had never heard that before give me a break!! and the other just thought I was full of osteoarthritis.. now every rheumatologist agrees with the rheumatologist who diagnosed me so I can't quite figure that one out?? just diagnosed in 2013. but I probably had the onset was ages 11 to 12 somewhere in there. so basically I went 34 years without a diagnosis! it was only from 2002 to 2013 that is had progressed so intensely that I'm not able to work anymore and was getting wrong diagnosis is for that time. So yeah you're right. so much needs to be done for awareness and I hate to say it but I've seen rheumatologist since uh my diagnosis and they don't really seem to know what to do with an advanced progressed person! I haven't got flares I guess that's what they're called since about 2002 my pain and stiffness is constant my whole entire spine from the SI joints all the way up to my neck both shoulders and both hips and the middle of my spine is just so flipping painful.. horribly deformed I did not have bad posture.. so yeah I know what you're saying I wish more rheumatologist would do their homework and because the three I have seen since my diagnosis certainly weren't up on Spondylitis whatsoever very disappointing.!!! but thanks for doing your video really appreciate that!!
Thanks for sharing your story. It will go some way to helping those that have pain and hopefully inspire people who read your story to keep searching for the answer. Stories like yours help to build awareness and we should hear more of it. Thanks again for sharing.
thank you for that I hope more people see your video.. and as you talk about exercise that reminds me I forgot to put that the only thing I'm able to do is I get in a heated pool.(it has to be heated cold water makes my pain way more intense). I'm not able to get up out of a bathtub so I don't take baths) and I'm not a overweight person by the way).. I do 30 minutes of stretching exercises that a physical therapist showed me to do in the water and then I do 30 minutes of lap s... and let me say I was NEVER a swimmer prior...now I did plenty of land exercises in the eighties and nineties aerobics Jazzercise exedra .. always worked at practicing good posture actually 2...so I was always a very active person I think that's one reason I didn't progress as fast as some but that's just a thought? from ages of like 11 years old to what 46! but it's still it was not constant...and I think I forgot to mention I get fractures very easily in my spine it doesn't take ANY kind of trauma that's what terrifies me cuz they are moving up towards my neck! and it's really crappy when you know you have one and they can't see them on the film!. thats what happened back in 2002 I was working and living in the state of Mississippi I kept telling docs it was broken. I would say i had a broken wrist years ago and I knew what a fracture feels like...they just thought I was a crazy person so unfortunately they were not seen until I moved back home to Colorado 7 years later. there it was plain as day on the film old transverse process fracture L3-L4 so by radiologist and Dr s and not addressing my fractures... NOW I have scoliosis. which I know it's mechanical and has nothing to do with the spondylitis. but still now I'm deforming in two different directions right? I've got another fracture in the middle of my spine I felt it happen I know it's there but here I am in The Good Old South again where they apparently don't know how to read freaking film.. LOL but it certainly isn't new it happened four years ago. anyway thank you for what you're doing really appreciate it I hope more people see this. you know the other bad thing. that's unrelated to the Spondylitis but is related to it really.. due to the fact that I was not diagnosed for 34 years.. I had a good 20 more years to work I was only 46 years old when I had to stop working had I known I had this I wouldn't ever been doing the type of work I was doing for one thing just a lot would have been different. so you know I'm pretty much ruined financially because ever since then I've had to live on a very low limited income is very hard.. so not only the pain and stiffness is 24/7 I just turned 60 it's just it's not fun anyway you look at it LOL.. but I would encourage people to get into a heated pool specially if you're not able to do land exercises anymore I mean it doesn't take all the pain away and stiffness but it is lessened for a short time. and I'll take temporary over nothing at all any day!!
Once again, thank you for sharing. Really appreciate you taking the time to detail your story so others can learn. Lets hope we can prevent others going down the same path.
ssue same here. I kniw it began when i was 13 and i was diagnosed at 44. The damage is done but it's not over. Just in the last 5 years i developed a hunch back. When i finaly found a doctor who was a OS and fairly young and very knowledgeable i was properly diagnosed. I cried when i found out the name of what i had been living with for most of my life. Since then, i have been learning as much as i can about AS. I read stories of people with AS and know i am not alone. I have a doctor who is not afraid to prescibe opioid medication and with that i am able and motivated to do physical therapy exercises alm ok st everyday. My reumarogist has me on humira. I didn't like the potential sude effects but i weighed those side effects vs AS getting worse by fuseing nerves and making me incontinent. My neck, although it has problems, isn't stuck looking downward. I want to keep that from happening. My heart was damaged by AS with mitral valve prolapse but the doctors say it's only a mild problem. I want to keep it that way. So, like anything else i must weigh the pros and cons. Same with prolia. Living with AS has made me go from a healthy teen who loved to dance, training for recitals and competitions everyday, being a team player in sports, and being overall healthy and active, to a depressed teen who avoided the pain of being active. I managed to keep fit but i also developed osteoporosis before 40. The activities that strengthens bones are painful and not advised when the spine has no cushion and is fused together. My rheumatologist says he wishes he could have started me on humira 15 years ago. I wish that too. I also wish that people would be able to experience the pain of others, even if just a few minutes in order to build empathy and understanding. Because in my experience, there is a considerable lack of those qualities especially in the people whose job it is to care for others. And especially now days when pain medicine is demonized. People who are sick need a toolbox of options and a team of advocates. The majority of people are gong to need this help at some point in their life. I would hope that as we advance in knowledge and technology that healthcare shows improvements. But lately i see doctors being told how to treat by insurance companies and public empathy being replaced with hysteria. Anyway, i am deeply appreciative to everyone who shares their story and builds awareness.
i have suffered for many years with lower back problems , can some please let me know it these sysptoms is AS because i am ready for the hills , its been 30+ years and on my last bad flare up 3 weeks ago i wanted to end my life , but it was all the meds i got , pain killers and diazipan sent me doo lally AGAIN wanting to end my life my symptoms I feel like my pelvis is splitting up the two sides inner groin my hip bones feel like they are burning through my butt cheeks bending . putting socks on etc hurts my back goes into spasms my arms get weak standing make it worse moving seems to make it a bit better but once i stop its like every wee bone in my lower back has dried out and im stiff as a board again and can barely walk
Hi Pat, sorry to hear you've had such a tough time. It's hard to truly diagnose you and be safe in this forum. Your symptoms do suggest a case for AS but I would recommend that you seek advice from a rheumatologist. They are the experts in this field. A series of questions matched with some investigations should allow them to confirm a diagnosis. Good luck with it all.
Late diagnosis/no diagnosis is common practice in Australia. Drs here are too lazy to fill out forms, when you ask for something it's like you're asking them to cut off their leg 🙄
Sir when the osteoporosis occures? I mean i have diagonosed with that disease and it is in early stage so, when is the possibility to grow osteoporosis?
That's a big question. Perhaps the following link www.bjchealth.com.au/ankylosing-spondylitis?hsCtaTracking=5f7e91b9-2d76-41eb-9d05-bf133024b934%7Cce4e1d93-605b-4cd9-9fce-42df8e3b354c will help answer some of your questions. You can take the time to go through the information and appreciate the complexity of management.
DISH and AS are different diseases so unlike AS, DISH does not have the same autoinflammatory features and hence the targeted specialized medications do not work with it.
I have bone marrow edema, erosions, subcondral sclerosis and other findings along with many symtomps... I feel like crap and I feel my spine is boiling!! my dr will only look at HLA b27 wich is negative. What can I do??
@@sandrak9173 sorry to hear about your situation. When you say doctor, I'm not sure what sort of doctor you have seen but I would suggest seeing a rheumatologist. They are the ones who specialise in Ankylosing Spondylitis and other inflammatory conditions. And if you have seen one already, perhaps seeking a second opinion. Please keep looking, there are great doctors out there. Good luck and thanks for sharing.
I am also have this disease as. From. 17 year to till now. I am. Now 19 year old.. Is possible to cure my problem.. Or not?. Because i am in medication for past one year.... Please suggest some.. Treatment to cure..
Unfortunately, there is no cure but there are medications and treatments that can help switch off the inflammation in the body significantly. It will be too hard for me to list and hence I have provided you a link that may be helpful with information on AS @t Good luck!
What if you have never gotten an diagnosis from a doctor, and you have a lot of pain throughout your body and now are too old for exercise lam 74 years old, have been in pain all my life , disc problems as a young girl diagnosed with those problems in Europe my mother was Dutch when we went to her country as children the Dutch Doctors diagnosed me with some form of disc issue whenever we returned to the states there went my care , l have suffered ever since, basically been trying to diagnose myself, all my symptoms are going towards Ankylosis Spondylitis, l would not want to go to steroids now but l would like for my excruciating pain to be eliminated please advise me as to what I should do thank you and God Bless you 🙏
Firstly, it's never too late. Getting an opinion and a possible diagnosis is still important. This allows targeted management. There are many different medications these days. Plus exercise can be done by anyone of any age. It can still have very positive effects irrespective of age. Small steps always to begin with. Please see a rheumatologist and go from there. Good luck.
You can reverse your Ankylosing Spondylitis by changing your diet which involve stop eating gluten foods like wheat, rye, barley, stop eating grains like rice, corn, oath, stop eating night shades like pepper, white, red or yellow potatoe (you can eat sweet potatoe), stop eating vegetable oils, peanut, stop eating fried foods. stop eating processed foods, stop eating white sugar, stop eating pasta, bread, dairy (milk), eggs, chicken. You can make smoothies like blending green vegetables like kale, spinach, cucumber, you can also cook vegetables, eat a lot of vegetables, eat coconut, avocado, eat home prepared/made whole foods like sweet potatoes, yams and beans. You can also do exercise like walking, cycling
I think eating an anti-inflammatory diet can help reduce the effects of having a condition such as AS or the broader spondyloarthritis. For some people, it works better than others. Once we have structural changes and bony fusion, I have not seen "reversal" of the disease. I think people can feel better and move better despite having scans that show changes to the bones/joints and definitely exercise and dietary changes can have a huge effect.
I have lumbosacral stiffness and slight pain for more than a year specially when i bend forward, sides and backward. MRI si joint & lumbar were normal, all my blood test are normal, persistent lumbosacral stiffness and slight pain with movement. Is this possibly eatly sign of NR-AXSPA?
It could very well be but considering you have done all the correct investigations and checks, you should have the confidence to continue doing what you want to do in life. I am making the assumption you have seen a rheumatologist and discussed your biomechanics and general movement patterns with a physiotherapist. If not, I recommend you seeing them as it is hard to give you any specifics on such a forum. Thanks for sharing.
Hi. Wondering if it's worth me getting a second opinion. A rheumatologist diagnosed me with AS recently in my 30s, and while I showed some of the classical features of AS i also have things such as: No spinal pain, no elevated crp Irritated areas seem more in the left rib and right hip (started in the SI joint and then with physical exercise very quickly resolved and moved more into the general hip). Pain doesn't feel inflammatory, and doesn't respond that much to NSAIDS. responds to muscle relaxants such as norgesic better. For a period of time was waking up with stiff muscles, however pain never felt joint related. Floatation tank therapy helped relieve a lot of the muscle stiffness except around my rib. Exercise such as yoga and swimming is what I do, although they are more likely to cause irritations to hip and rib rather than make me feel better physically (of course they make me feel better psychologically). I felt the rheumatologist was very quick to put me in a box rather than listen fully to me. Also, prescribed sulfasalizine but I thought this was not considered useful for AS?
Hi Arun, thank you for commenting and your queries. It is very hard for us to comment on your symptoms online and make judgement about your management. The best we can do is say that if you are unsure, it is worthwhile seeking a second opinion. It may also be worthwhile seeing a physiotherapist who has a special interest in AS as they can do some baseline measures and help track them over time to see if your condition is being managed well. Unfortunately, I am unsure how easy it is to have access to such clinicians in your part of the world. Good luck with it all and keep doing what makes you feel good both mentally and physically.
@@bjchealthAU yes I will do. I'm in Sydney. to me however the attitude of some rheumatologists to quickly put people into a box rather than look at things more holistically, and label things very quickly is exactly what gives many of you a bad name! I'm notsuggesting to tar all rheumatologists with the same brush but my experience with them to date has not been great
If you get the right management specific to you and you remain active and have tailored exercises, there is a good chance you do not have to remain permanently "stiff" or ankylosed. It is hard to answer your second question as it would depend on how long you've realised you've had symptoms, the severity and whether you are getting appropriate treatment. I would say if you got diagnosed early and then managed well, it would be unlikely.
The data seems to be quite conflicting and overall, there is not thought to be any clear cut increased risk of any particular malignancy. What is clear is that uncontrolled inflammation, particularly with high inflammatory markers signalling systemic inflammation, does increase cardiovascular risk. Dr irwin Lim
I was diagnosed in late 30s, had it very bad but 3 years later after losing some fat, exercising regularly and taking Ayurvedic medicine as well eating healthily I no longer have major issues. In fact I feel 21 again
@@ricelover510 go 90% vegan, eat meat maybe twice a month, use non comedogenic oils in foot, eat nuts and seeds and grains, never drink fizzy drinks, eat avacados, plenty spinach and kale etc, mushrooms, fruits. Use food as medicine. Use garlic as medicine in morning crush one clove and mix with one tspoon of local organic honey and 1/3 tspoon of curcumin, swallow with warm water, enjoy
@@rammohanragu1865 UK, I created my own Ayurvedic medicine using 3 of the most important foods with the best anti inflammatory properties, garlic, organic local honey and curcumin(pure turmeric)
I am 26 and single suffering from Ankylosing spondilitis . I got to knw about as at age of 23 now it's Getting worse. Spine stiffness is getting worse day by day, can't move my neck properly. Day by day I am getting depressed and worried about my future as in india marriage for girls is very important. Don't knw what to do. Give some advice please
Hi Nidhi, thanks for sharing but at the same time, sorry to hear about your situation. I think the best we can say is for you to find a doctor locally who understands the disease. It sounds like you have been given the diagnosis so perhaps trying to reach out to that doctor/rheumatologist again and see what medications may work best for you. Below are some links you may find useful for general management and also for basic exercise: - arthritisaustralia.com.au/get-support/resources/working-out-with-michael-slater/ - nass.co.uk (this group have an app with exercises on it too Good luck.
@@bjchealthAU Sir thanku for your reply and also thanku for sharing this vedio 🙏 sir, doctor had gave me a painkiller which is not good for kidney so I am not taking it and he told me do excercise also told me to reduce body weight .
@@nidhiseth7668 glad to hear that someone is across your management. I would keep in touch with them and take on the advice of exercise and eating more healthily. Once again, good luck with it all.
Have you considered going off gluten and dairy? I’ve ankylosing too, diagnosed just 3 months ago. My flares are not there ever since I have gone gluten and dairy, pepper too, tomatoes too. All are bad bad now. Body doesn’t like it. Try and change your diet
@@mytravls no dear , I am following my normal diet as doctor told to reduce weight and also told to do excercise regularly. I will try what your are telling.
![[LIVE] : ONE ลุมพินี 88 | คู่เอก "ป้อมเพชร vs อัสลามจอน"](http://i.ytimg.com/vi/1ZqTVVbMgbo/mqdefault.jpg)
It took almost 20 years of agony and countless doctors to get diagnosed with AS. The sad part is I literally had to figure it out on my own, and had to pay a Dr out of pocket to get the tests needed to confirm it. Its extremely disheartening to see so many people with a similar experience, finding answers shouldn't be this damn hard!
Sorry to hear about your history but thank you for sharing. It is sad and very disheartening for many. Hopefully people persist like you and the time needed to come to the right answer shortens significantly with more awareness. Thanks again.
@bonnie fitts well done on figuring it out! Of course it would have been nice if someone was able to help you out earlier but glad there's a plan now. Thanks for sharing. Hope people learn from your story.
I'm with ya. I have seen countless clueless doctors who should know better and refer you to an arthritis doctor instead of pain management doctor.
@@billmillmine3106 thanks for sharing. Hope you are now on a better management path. The more we can educate everyone, the better for those who have symptoms of AS. Good luck!
@@billmillmine3106 unfortunately, this is not the forum to give specific medical advice. It would be best to still speak to your current team managing you. If you have had years of pain, it will be a multi-faceted approach which may include a combination of medications, lifestyle changes in attempt to keep as active as possible, dietary management and working on one's mental well-being. Easily said in one sentence but we know it will take effort and practice to pull it altogether. Start with small goals for small wins to build confidence. Again, good luck with it all.
I am a 57 year old female. Recently diagnosed. I had the typical “growing pains” in both ankles starting at age 12. Later came plantar fasciitis in both feet. Then the lower back issues that were diagnosed as strained muscles in the back. Then came the sore, stiff neck which made it difficult to turn to look behind me when backing up a vehicle. Then came the tendon pain. Was told by one so called practicing physician that he couldn’t do for me what a good psychiatrist could. I cried all the way home then fired him. But, it caused me to give up trying to figure it out, for a few years. The pain became so intense I could not get out of bed. I had my first hip replacement at 54. Then came back injections in to the spine where my x-rays showed two bone spurs on a vertebrae. Finally, thanks to my husband, I now have a fantastic rheumatologist. After countless sleepless nights, I can finally get through about 6 hours of sleep before the soreness wakes me up. I am currently on Cosyntex and getting a little better. We are all strong because we have to be. Prayers for everyone that is on here.
Sorry to be hear about your journey. Thank you so much for sharing your story. I am sure it will help many who read it and lead to earlier diagnosis. Good luck and hope things can continue to improve.
Late diagnosis made me go from 6'4" to 5'7". I'm angry. Can't play outside with my daughter. Just had a hip replacement 3 months ago. Waiting for approval for my other hip. It's hell. People need to hear about AS. Especially doctors. Having a rough time with this curse. My employer stopped working with me. Threatened to fire me because if I couldn't do my job. Here is a little truth about living with AS. If you have it then I'm sure you've had periods of time like I'm having. I'm sick of it. Just needed to vent.
Thanks for sharing your story and sorry to hear about the rough time you've had with this condition. Though I know we can't reverse how things are, we hope your story will help others get diagnosed earlier and receive the care they deserve.
I understand your anger and frustration all too much.
@@6.2ltrv85 just got my other hip replaced. When it heals everything will be a lot better. Do you have this curse too?
Total Hip Replacement is just the gift for an AS patient to start a new life. You will get well soon 😊. God bless🙏
You're the first person I've heard speak of the severity of this condition. Everyone keeps talking about going for a swim. My father ended up on crutches at the age of 30 because of this. He also had a major height reduction and went from 5'5 to 4'8. He had his hip bones practically removed because that was the way they treated his condition when he was diagnosed in the 60s. I felt crazy reading other comments. It had me questioning if my family had the condition since other people's cases didn't seem as severe.
My AS was diagnosed at age 22, having experienced pain for 5 years. I am now 71. It's been a long haul. I cannot imagine not having AS. If I were 'cured' I think my mind would reinvent it. I and AS are now one and the same thing. At the beginning I was in denial, then I thought I could cure it with exercise. Then came grief...a lot of grief. Then finally acceptance. It sounds a bit like the experience of losing a loved one and in a way I suppose it is. I think AS sufferers develop an uncommon kind of strength and determination that sees them through. Life is still rewarding and wonderful...never give up!
@abhijit pal Thanks for taking an interest in my comments. I eat fish every day, quite a lot of fruit, vegetables, bread, some cakes and sugary things. (which I try to keep away from). I take some anti-inflammatoires: célébrex, aspirin neurophen etc, as and when I need to, but not much. I also take turmeric, fish oils, evening primrose oil. My original comments sounded a little bleak, but despite eventual spine fusion, I have experienced periods of remission over the years, since the first very painful attacks back in the 60s and 70s which sometimes re-occur. I tried Humira injections some 14 years ago, but had a very bad reaction and bad treatment from a doctor and it nearly finished me. I have pursued a sometimes obsessive regime of exercises for decades including weekly hydrotherapy and swimming.
I think that's it.
Thanks.
@@tonyday7128 aye mate can you tell me what medicine you have,thanks,
@@fjfjfjffjfjfjjf3326 sorry for delay in replying. I'm taking Celecoxhib at present. It's an anti inflammatory which is kinder on the stomach. I take relatively small amounts. You can take a lot of inflamatories for long periods, but I don't like this. It can harm your stomach. I also take the supplements described above. Hope you're not suffering too much!
Hello sir ...I want to ask u that .... Did it causes bamboo spine ...Or joints get destroyed by this .... I am newly diagnosed with as and I m too depressed ...Do this AS make me on wheelchair or on bed for my life time.... Plz plz rply ....I will wait for ur rply
@@Lets_travel_1419
Hi Deepak
Thanks for contacting me. I can only describe my own experience and what I've learned but I think it's very unlikely that someone with AS would need a wheelchair except in old age (like me....and I certainly don't need one). My spine however, is quite stiff now, so generally moves 'as one'. My joints are not destroyed, as AS is a disease of the connective tissue, so for me the actual joints are not affected. Also, I've had many remissions ...periods completely free of pain. I've found that the mainstay of treatment is to keep moving, stretching and exercising. I'm still walking, swimming and doing things I love. Everyone's AS seems to be individual to them, but exercise and anti-inflammatory medication are the common treatments. (If you find: www.nass.co.uk exercises are illustrated)
It's also useful that those close to you know what you're going through so keep talking! So every best wish
and don't give up!
11 years of chronic pain. Today I was diagnosed. There just not enough content or info on this.
Yes, it is very frustrating. Sorry to hear it has been such a long journey for you. Unfortunately, the awareness of AS is poor but hopefully the more we can do to advocate for people living with AS, the more people we can help people earlier in their journey. Thanks for commenting and we wish you well.
Brian Mino out of curiosity why do u ask that? About the blood.? I have AS but am negative for the genetic marker. But I am RH O negative
Just wondering how things have been since being diagnosed.
I am RH negative also. Does that have something to do with it??
Hien Pham no pain medicine given today except NSAID’s that give you ulcers... it’s crazy to have this much pain in 2020 with no help but shots that give you life threatening infections that cost 700 each and they say you need one per week? No money spent on research. I’m getting depressed living in so much pain with no help but papers to exercise. It’s insane. I saw my Mom suffer and die young and now it’s me...nice to have a diagnosis but no help?
I started having back pain when i was 15.
16 year old me suggested to family doctor it may be ankylosing spondylitis cuz the symptoms all checked. She literally told me if it was AS i wouldn’t be able to do a toe touch ( after making me do a toe touch). Doco assured me and my parents that it wasn’t AS, and jokingly told me to be a doctor.
-21 years old and just got my diagnosis of.... ankylosing spondylitis.
That's a shame but grateful for you sharing your story so that someone else can benefit from this. I hope you are now on a good management path. Thanks again.
Stay active......I just turned 62, and suffered with excruciating pain for years. Found out I had AS in 2005, with a positive B27. I stay active, only sleep 6 hours a night, as the longer you sleep, the worse the pain becomes. Just found out I have 2 broken spine, 2 herniated discs, 4 pelvic breaks, and spinal stenosis. Now, I am on Narcotic pain meds, have been since 2005. I hate it. It helps me remain active.
Make sure you stretch and do Physical Therapy, at home. Stretch before getting out of bed. There are many self help sites for AS. But staying active is the best therapy. I walk, speed walk, stretch, garden, and bake bread where hand kneading the dough actually helps my ribs and upper spine.
God bless you and good luck.
Oh....and NEVER allow this disease to define who you are. That alone, makes a huge difference.
doctors are rubbish thinking only of their own pockets
Carried the dx of Fibromyalgia for 26 years. My brother was dx'd with AS in his late twenties, i saw everyone i could and did everything i was told to treat the fibromyalgia. So much work, time and money. My SI x-ray was "normal" and my inflammatory markers were negative. But my pain and stiffness increased, my lymphocyte count kept rising and started having kidney issues. Finally a thoracic spine x-ray and a positive HLA-B27 test confirmed the dx just 2 years ago. I have mourned the "if onlys" and am moving forward the best one can. Good luck to all! ❤
Thanks for sharing. Hopefully someone can learn from your experience and be diagnosed earlier.
I wasn’t diagnosed until 25 years ago. I’m now 70 and have suffered so many complications. The only thing that helps me is to keep moving.
Thanks for sharing
I was diagnosed around age 57. I already had been diagnosed with scoliosis in my mid-20’s. I’ve gone from over 5’7” to about 4’10”. The pain is all-encompassing. I call it ‘noise.’ I have a very loud life.
Don’t give up… I’m almost 67 and just diagnosed recently. The prospect of new treatments offers me real hope for a better future. Reach out to your family Dr and insist on referral to a good Rheumatologist.
I'm in Texas and it took me a year and 5 different doctors to get my diagnosis. My xray was normal but I'm so glad a doctor believed me and did an MRI. The MRI showed the inflammation of my SI joints as well as other joints. The doctor that ordered the MRI never thought to send me to a rheumatologist but instead to physical therapy. When physical therapy didn't help, I found another doctor and showed her my MRI. That doctor did a blood work and then sent me to the rheumatologist. It felt great to finally get a diagnosis and treatment that actually works. I see that I'm one of the luckier ones because I found the right doctors before damage.
Thanks for sharing Amanda. We are glad that you got there eventually. It is unfortunate that many still don't or it takes so much longer to get the diagnosis and then receive the appropriate treatment. Hopefully, your story and the more we keep telling such stories, the greater the awareness of AS and the management people can receive.
@@bjchealthAU Dr what if I can't have an MRI?
@@joy-115 Ankylosing Spondylitis is diagnosed/classified based on X-rays of the sacroiliac joints/pelvis. The X-rays however pick up pre-existing damage and do not detect current inflammation or the situation when there is inflammation without accrued damage. MRI is needed for the latter.
@@bjchealthAU I had an x-ray that read moderate thoracic spondylosis when I had pneumonia about 3 months ago and I have been in excruciating thoracic pain since 2004. I also have heart block. I was diagnosed with heart block in 2005 and had to get a pacemaker and then I was diagnosed in 2006 w Lyme disease. But for quits awhile I've been having pain in the areas that sounds like it could be AS. Plus I have bad red eye irritation a lot 😔
Can it damage eyes
My AS was diagnosed at the age of 28 and now I'm 37 years old. In beginning I went through orthopedic doctors. But they were failed to treat me then
i went to rheumatologist at the age of 30. He told me that you came to me in well time, as no major damage was done to me.
He treated me with embrel injections for about 6 months course.
I was cured upto 90% and feeling fantastic, energetic and flexible.
Then by time again I realized that i m losing my health and then rheumatologist suggested me to take medicine (Sulfasalazine salt) 500 mg twice a day one tablet brexin.
I didn't take any therapy. I just play sports like badminton.
And I'm enjoying my life Alhamdulillah
Thanks for sharing your story. Glad that things are going well for you.
Assalamo aleikum hassan pls help me in the name of Allah how did u cured it?
@@kassimfaruk2513 waalaikum assalam
I'm not 100 % cured. But 90% I m healthy. I take sulfasalazine salt 500gm medicine twice a day and a brexin tablet daily
I would suggest you to go to rheumatologist. He is best in dealing with Ankylosing spondylitis disease.
Sulfasalazine can cause infertility, arguably? No?
I was just diagnosed with AS and Psoriatic Arthritis at age 67 which is a very late diagnosis. It hasn't been for lack of seeing a doctor, just not the correct doctor. In my forties I went to orthopedic physicians for back and joint pain and have endured ten surgeries on every major joint. A two level cervical spine fusion, three level lumbar laminectomy and bilateral hip replacement, including surgeries on both knees, shoulders and hands. Even after all the surgeries I was still in chronic pain which made me decide to see a Rheumatologist who told me that I should have came to him 25 years ago, and I now wish I had. I regret that it took so long to be correctly diagnosed with AS, PsA and saddened that the many orthopedic doctors were unable to connect the dots. The damage is done, but hopeful that my quality of life will improve now that I am being treated. Update 2/19/20 Humira didn't work..
I dont have AS but i can imagine it might be difficult to decide which biologic to take .. someone commented that Enbrel worked for him, it may have been in another vid though.. im studying AS as i ran across it looking for back exercises as i have developed tremendous stiffness in my lower back and hands and feet in the mornings, the back pain and stiffness does not abate throughout the day in fact I can't reach down to put my shoes on sometimes. I've heard a couple people mention that works fir them.. I literally bought a bottle today as I remember reading several articles and hearing my friend talk about her daughter who had juvenile arthritis say that aspirin was the only thing that worked for her but arthritis is obviously different. Hope you are getting good care and feeling better. Sorry to hear your story, it's terribly disheartening to hear stories like this where it seems like some doctors need to do a whole lot more for their patients.
I wish you the best and I hope yoir quality of life improves significantly.
firebearfl what treatment did work?
I am 67 also and you are telling my story...same thing for me...forget what a pain-free day looks like...depression doesn't help...ugh..infusions now..2nd new drug...does help some...more tests..MRI..and a procedure at hospital for direct infusion into hip...this sucks!!!! Be well
@@charliewilley5004she said Humira..
Just diagnosed at 56. I’ve had symptoms for decades but blamed it on other things, doctors dismissed my complaints or honestly didn’t know what to make of it. It took a second round of not being able to walk bc of heel pain for a podiatrist to mention a rheumatologist. Why the GP or orthopedist never did still baffles me. I just started Humira so no relief yet. I feel like I’m 80 years old, I cannot do the things I used to do and when I feel ok I pay for it after being active. Dont be stoic, take matters into your own hands. You know when something is off.
Thanks for sharing. Unfortunately, it is a similar story for many. I'm glad you are being managed now and hope you get significant relief. Thanks again.
I am 57 and just got diagnosed. Already have the bamboo spine. I have constant pain. I hope the meds help some. Starting this week on them.
@@markbrinson6090 So sorry you’ve found out late and it’s progressed so much already. I feel fortunate to not have much spine damage yet but my muscles & ligaments are so stiff and sore throughout my body limiting motion and activity level. Dr says meds take 4 months to see if any relief. Nothing yet but we have to keep trying. Praying we all find some relief.
Me at 53. Bewildered and baffling doctors for 13 years. Ending up on Psych meds.
i was diagnosed when i was 18, experienced pain for most of my life beforehand, now i’m 20 and take humeria :) before i saw a rheumatologist, i went to orthopedics, chiropractors, pt, acupuncture, etc. it was hard but thank whatever god i finally saw that doctor she’s wonderful
edit: more
Glad that you finally got a diagnosis and the appropriate treatment. Hope more people can follow your path. Thanks for sharing your story.
How's the Humira working out for you? Thanks
I had seen 15 doctors by the time i was diagnosed!
Hi Milui, sorry to hear about what you had to go through. Thanks for sharing. Hopefully, as people hear your story and we keep advocating to get the message out, things will improve for those with AS. Good luck and I hope you are being looked after now.
Same here. But finally I seem to have a working biologics regimen. Let's see what the future brings.
@@junglecat_rant Well done! Thanks for sharing how you are going. Glad things look brighter.
I really wish there was a cure for this. I was recently diagnosed with it and I believe it is starting to effect my eyes. Pressure and blurry vision doesn't help
Oh joy. I've seen one so far gotta start somewhere
I have people stopped me in the grocery store or different places an asked me what’s wrong with my neck because I can’t look straight ahead. First of all, that’s kind of bold but when I tell them what I have, they have never heard of it. One time I had one person know what it was because they were a doctor. By the time I was diagnosed they told me that any competent doctor could tell that I had ankylosing spondylitis just from a simple x-ray because your spine starts to look like bamboo. Some people even call AS bamboo spine
Thanks for sharing your story. It is often a silent disease as the condition is not visible. Our hope is to keep educating and advocating so that the disease is picked up early and that others to not get to the stage of having a "bamboo" spine.
I was formally diagnosed with Ankylosing Spondylitis when I was 23 but I had been suffering with pain since I was 8 years old. I’m now 39 and I’ve had one major spinal surgery so far. Unfortunately, I’m on the more severe spectrum of the disease and have since been diagnosed with RA and PsA. But with anything in life you must persevere and live life to the fullest because you’re only here for a short time! ❤
Luv your positivity and your outlook. Sounds like it has been a tough time for most of your life dealing with these conditions. Thanks for sharing and helping all of us see the brighter side of things.
❤❤
I’ve had symptoms not knowing they all tied together. I was maybe 19-20 when I had back and iritis issues. Sciatica was painful. I started working out hard in my late 20’s. It helped but now in my 50’s the bowel issues are a problem.
I now have a farm growing my own food from my garden and also raising meat chickens and pigs.
My diagnosis is spot on and now a diet is most important. I stay active on my farm. I milk our goats, (goats milk has been amazing for my gut) feed all our animals and tend our 1/4 acre garden. It’s certainly a workout building infrastructure and such. I limit red meat consumption. I had a hard time when I consumed too much.
I always thought it was odd that when I tweaked my back a certain way I would get iritis.
I hope a natural approach will keep me going as I do not want to take medication. My father had kidney disease (now passed on) so NSAIDs are not really an option. I take them occasionally.
Awareness is key. Thank you for sharing.
Hello there’s is a permanent cure for ankylosing spondylitis using herbal medicine from dr nafuar
I am a living testimony to this great medicine as it cured me from AS permanently
❤
I was diagnosed with AS by Dr Lau from your clinic in '22 ! I am very lucky to have him. He is very, very thorough, caring and listens. Yes ,it took me about 4-5 days to get the MRI for AS done ,as they have special ways to do it. Beside Sacroiliac joint it included both hips aswell.
t Im very lucky to have dr Lau!. However I already had pain in that area for few years prior, but no one paid attention bf I met Dr Lau. Now ,even i have Dg all is new to me bc i didn't know how much is connected with AS .It is very debilitating to live with it. Im definitely in more progressive stage of AS already.
Thanks for sharing your journey. I'm glad you have found a doctor to help.
I am 26 and after being diagnosed last year, I have realized I have had these symptoms since I was 12 years old. Maybe younger. One symptom that always stumped me that I could not figure out, was sharp nerve pinching in my hip when I walk. I never heard of this disease until I got recommended to see a rheumatoid doctor from a chiropractor. I have 3 discs that are already partially fused. I am young but I don't see my condition ever getting better.
Thanks for sharing and sorry to hear about the journey that you've had thus far. There is much you can still do the condition. I hope you are working through your management plan with your rheumatologist. Medications to try and targeted exercise to help. Many people have AS and lead very good and active lives. Not sure where you are from but countries like the US, UK and Australia have associations that help people with AS. Perhaps they can provide some support.
It has been a very long journey for me on AS. I have suffered for 36 years before being diagnosed and had 4 lower back surgeries. VERY few doctors appears to know about AS; most importantly, when they do not know what is the source of the problem or one of the problem AS brings, they tend to make the patient believe that he/she creates stories or have to toughen up. No doctors in SO many of my visits has ever said, sorry this is not easy for me to understand, you need to see a rheumatologist, or something similar.
Why is it soo difficult for doctors to make referrals to other doctors out there that might have better answers for patients.
Yes, it can be very frustrating and it is a very common theme we hear. Doctors are dealing with so many different conditions and diseases each day and they are just human I guess. Plus AS is just not on the radar as awareness generally is poor. The more we can promote and advocate for people who live with AS, the better things will be......we hope. Thanks again for sharing.
Money because they don't really give a shit about your health, they just want money.
Sorry to hear Paul. I've just been diagnosed myself today. I've used so much money on all of these doctors, physios etc.
Paul, I am sorry to hear what you too had to go through in order to be diagnosed. We have similar stories.
This is my story as well.
He was soooo easy to listen 🎧 to and understand! Thank you so much
Thanks for the support 😊
I’m a 40yr old female. I just now got the diagnosis because of MRI. My whole lumbar spine is fused & some of my T-C spine. I just had my first injection of Cimzia. I hope it helps stop the progress and helps with the fatigue. Thanks for the informative video.
Thanks Michelle and thank you for sharing your story. I hope the new meds help too.
BJC Health Thank you ❤️
Hope cimzia works for you,
@@abdelhalimbouzourine7145 Thank you, unfortunately it didn’t. I developed Lupus and they stopped it, thankfully the Lupus went away about six months after stopping.
Mine wasn't diagnosed too late from a physical perspective, but by the time I did get it I was too depressed and flat to take things seriously or to cultivate a motivation for improvement. Now little has changed- my family seems largely disinterested or unperturbed by my condition, which really id have expected to drive me over the edge, but the more I think about it the more it gives me a bit of a push to fight, purely because I want them to be wrong. I want them to accept that their rules and ultimatums were stupid and damaging to me and this isnt all just my fault
But its a tenuous tight rope. Some days I get fired up and motivated, then some days I come scarily close to giving up entirely, and a lot of this was preventable.
Like others have said - we need more resources and media coverage for things like this because we could change people's lives with the right proactive decisions, and if we work together we can accomplish more than if we stay spread apart
Are there any communities for people suffering from ank spond and similar? Can we make one? 🤔
Thanks for sharing your story. Yes, it is an invisible disease and very frustrating when the people around you just don't get it. I'm glad you have been able to fight and find motivation. You are definitely not alone. I am unsure what country you live in but some have associations for spondyloarthritis or Ankylosing spondylitis. If you are in America, there is creakyjoints.org and spondylitis.org. Here in Australia, Creaky Joints has an Australian office. In the UK, nass.co.uk. Good luck with it all and thanks again for sharing.
I am sad to read your story, I really hope you can find a good Rheumatologist to help you find your way into better quality of life and well being . Demoralisation, is very real, arising from the awful isolation of chronic pain without a name - unfairly attributed too easily to personal weakness and inadequacy- untreated disease allowed to run rampant, inadequately relived disease and suffering, yes all this has risen in me too- feeling hopeless, useless, then helpless, walking away from cherished work, with a creeping loss of meaning and purpose … all this like a black hole drawing me in, …, while trying as hard as I could to keep contributing , giving, working, overcompensating. All too much now. Now is the time for me to let go of that fight, rest more, be kind to myself, heal, care for myself. A diagnosis , even after decades delay, can actually be liberating from the self hatred and others judgements. The kindness and understanding of skilled clinicians, enlisting family support, and the prospect of treatments … all had given me immense hope. There is more to us than our diagnosis, but right care and treatment, allows that ‘ more to us’ the space and care to heal, grow and develop again.
I wish you well… don’t give up.. you are not alone….
I had 10 yrs of pain and plantar fasciitis pain and back pain but no one tell me that I had this diagnosis ... it is so late ... I hope this can increase the awareness ...
Yes, your story is such a common one. Thanks for sharing so that the word gets out there about this disease. Hope you are getting better management of your condition now.
started having major back pains at 11 years old. by 13 i was diagnosed with scoliosis. by 14 i had an arachnoid cyst removal from my spine. by 15, the pain was back and even worse (knee, wrists, hips, etc). i went from 5’7 to 5’4. plenty of MRI’s and told that i’m fine. got an ANA test at 16 that was positive. i was sent to rheumatology, one x-ray of my SI joints told them i had spondyloarthropothy. quite devastating knowing that i was in pain for so many years and just now finding answers whilst getting worse and worse each day.
Yes, very frustrating. Thanks for sharing. Hope the care you are receiving is helping.
Diagnosed about 2years later after I had the symptoms. Now, I am 30years old, and 6 years passed.
Before I had an operation at end of the spine. Later, I always feel painful even the doctor checked and told me, the operation was successful and recovery well. However I always think the painful is caused by the operation, and went to many hospital to check my spine, did X-ray, MRI, all doctors made the wrong diagnose. What a Disappointed,. Finally, meet a doctor who listened my symptom, and suggested me to do BL-27, and go to see another doctor, the result shows positive, and I did CT, then it's diagnosed.
I have to see all depends on if you can meet the right doctor. After diagnosed, I am anxious so much, and complain why it happened to me. Months later, I accept it, and feel lucky to be diagnosed so early, and disease is controlled.
I started exhibiting symptoms of AS in my early 20's. I wasn't diagnosed until I was 48. By that time I only had 1 good hip and a few toes that were not inflamed. My life has been hell physically. I'm on Humira, but still deal with flares in joints and my eyes. I'm terrified of what my future hold.
Thanks for sharing. Hopefully your story helps others be diagnosed earlier and for them to keep asking the right question to the right practitioners.
Excellent Dr, the most short, direct and precise explanation. Thanks
Thanks for the positive feedback. Appreciate it.
Same with me, 20 years in pain, I take medications I can't handle the pain without, the stress was so bad by not been Able to sleep I was diagnosed with a generalized stress disorder, I was so sick with pain I had to stop working , I'm going to stop hear because I don't want to relive the hell I went thru not been able to work and no money and go thru the hell with family and doctors, and clients that lost patience, like Bob Marley said in a song who feels it knows, the rest get bored or tired. I learned to meditate that helps a lot, listen to music, and play in my garden,
Thanks for sharing. I hope things are a little better now.
I have had AS since I was 23 I'm now 58 it wasn't diagnosed until I was 52 so it took a lot out of me my neck is cocked to the right hands won't open or close and the pain is very bad been given every medication they have for this disease
Thanks for sharing your story Terry. Sorry to hear it has been a tough journey. We hope others can learn from your experience. Thanks again.
Been to all the doctors (rheumatologists included) and they literally laughed in my face cause I wasn’t in a wheel chair. It’s now been 10 years of chronic pain and I’ve yet to get a useful diagnosis - I was told I have fibromyalgia and at that point they completely stopped trying to do anything useful for me. I’m in my twenties and don’t want to live anymore because if this pain. My body is extremely stiff and I’ve got the lower back pain and plantar fasciitis. In the past I did physical therapy which was helpful and I’d like to start exercising more again but at the moment my pain is so unbearable I feel hopeless. If a single physician had taken my pain seriously I wouldn’t have spent a decade suffering. I would have a solution by now, even if that meant painful exercise I would be much more willing to do it and maintain it if I knew this danger of irreversible damage from AS. I’m disgusted that the only course of action left for me would be to keep begging doctors to re check, re test, etc but I refuse to experience that trauma again. Every time test results came back negative or there was something a bit off but it didn’t lead to anything. How can anyone reach out for help after a decade of this? Years and years and every time you are denied help. Even if I truly only have “fibromyalgia” I would still require some form of guidance but I never did.
20 years of AS. Only diagnosed about 10 years ago. Irreversible damage is done. Lots of bone spurs. No range of cervical spine n totally fused. Bilateral SI joints also fused. Planters fasciitis. It's incredibly painful. Representing myself in my redetermination case for Disabilty next month n hoping I get to keep my little check. I'm on SSI
Edit to say I am HLA- B27 negative. 43 yr old female
Thanks for sharing and sorry to hear your tough journey with this condition. Hopefully, those that need help more readily will read stories like yours and seek the right advice. It can be incredibly debilitating. I also hope that you have found management that can help some of your symptoms. Thanks again for sharing and good luck.
I spent years suffering back pain and sciatica, despite many visits to my GP and visits to A and E and numerous X-rays i was diagnosed with muscle pain/sciatica and osteoarthritis.It was only when a new doctor started at our surgery and sent me for a specific blood test that i was diagnosed as carrying the HLA B27 gene which i was told is an indicator of AS. After further tests this was confirmed and i was put on Diclofenac, this seemed to help for a couple of years until a blood test showed that my kidney function was failing rapidly so i was barred from taking any anti inflammatory meds.I was basically back to square 1, lots of pain, loss of appetite and bowel problems. Eventually i was accepted on the Humira program, i have been using Humira for 10 years now and it has improved my life considerably. However because of the lack of diagnosis over many years i have been left with a severely bent spine and have lost 4 inches in height so diagnosis as soon as possible is crucial.
Hi Stan, really appreciate you sharing your story. I'm glad to hear that you were finally able to get some relief and care you deserved but of course disappointed it took so long to occur. That's why we try to get this message out so that we can help lessen the number of stories like yours. Once again, thank you for sharing.
Sounds very similar to my experience too but with a central disc protrusion throwing the doctors off. It’s only because of orthopaedic doctor asking for hip ct scan that showed SI joints with significant ankylosis that I have a AS diagnosis but now awaiting what is going to happen next
Anti inflammatory diet, cut dairy and gluten.. it sounds impossible, but if you make small changes and get some good recipe books, you'll improve things! I've just been given a diagnosis of spondylitis and psoratic arthritis :/ i was treated for cauda equina 5 years ago.. been in severe pain the past 8 years, no work, etc. I'm starting biologics this week. I hope they work. My spine is sore all over, limited movement in my neck.. pain in my foot, knee, wrist, elbow, and along my sternum.. It's been intense, but after cutting out a few food groups, I've noticed an improvement.. not massive, but maybe in time it will be.. there are loads of positive stories out there, just need to find them and create them! Wishing everyone healing ♡
That's a wonderfully positive message. Good luck with your progress. Thanks for sharing your story too.
@BJC Health ah thank you, and thank you for taking the time to share your knowledge. It's been really, really, really helpful. I look forward to watching more videos and learning as much as possible and hopefully conquering it all :)
@@aoifebee780 Glad to hear and thanks for your support. We will continue to advocate for better care and comments such as yours do give us further motivation.
Started feeling symptoms at 18 yrs old. At 27, my job threatened to fire me because I was a risk to coworkers. Went to the doctor, bitched him out for feeding me ibuprofen for 9 yrs. He then ran test, xrays, etc and 2 days later I was diagnosed. I am fused from pelvis to head. Cant turn my head and spine is curved already. Sucks
Hi Steven, sorry to hear about your situation. And yes, it sucks. Thank you for sharing so that more people can learn from your story and be informed. In so doing, hopefully push for answers to get to a diagnosis. I hope you now have a regiment of exercises and the right meds to at least help maintain what you have and make you stronger. Thanks again and good luck.
Are u HLA positive?
Your so welcome if it can just educate just 1 person that could make a difference
Yes, that is our hope too. More we can educate people about this disease and advocate for those who have it, the better for everyone. Thanks again.
So, so good to hear an Aussie accent, talking about AS here on TH-cam. I am a late and constantly changing dx. While I was dxed with AS almost a decade ago, every time I come across another Rheumy the dx seems to change. That or they just won't commit, they just call it some kind of Inflammatory arthritis. OK, admittedly I have more that one systemic condition that directly affects the joints, which seems to confound the issue. Apparently I am also a very complex patient. My take on that is shitty gene's, ha ha.
I am female, 50 something, B27 negative, RF negative, ANA positive. I have a relative, my mothers uncle, who had AS. I also have plenty of relatives with RA. Fortunately I have been on DMARD's the whole time. I have tried a biologic but I kept getting stomach infections. My Rheumy at the time told me that if I couldn't tolerate one biologic I couldn't tolerate any of them. I also hvae a standing order for rule 3 testing which I get any time I have another blood test done. No one seems to be monitoring them so I don't worry too much. I have had imaging of my lungs and lung function tests, the results of the LFT wasn't good news.
As I live in a small country town (in NSW|) and am a waaay too frequent, frequent flyer at my local imaging place. Lets just say the guy who reports on my imaging is always the same guy and he isn't overly concerned with being accurate. It's OK if the specialists actually view the imaging but because I am complex, most of the time there is no time for that. They just take the report as gospel. I have had 3 surgeries on my spine so far. 2 on my Lumbar/sacral spine and just recently a big Neurosurgery in my C spine. After my second dose of Pfizer vax back in September 2021 I went into the worst flair I have ever experienced. I am still stuck in that flair. I had a CT recently, couldn't have a MRI because I have metal fixings in my neck. It showed allot of degenerative changes in the places AS typically attacks, the spine and Enthesis's. Of course the imaging reports call the degeneration in the spine DISH
Any way I have a question or 2 for you. Can DISH on imaging be mistaken for AS?
In relation to Biologics, is it true that if side effects from biologics happen with one biologic it will happen with all of them?
Then following on from the last question ( I know some one with Lupus, who was put on IVIG because of constant infections caused by a biologic she was on) Would that ever be an option for some one with AS especially if their condition is being poorly controlled just on DMARD's?
What genes have u got ?, I used to by levis but they are a bit expensive, now I just buy the one's from k-mart and I find them pretty good
I had ten plus years of suffering major symptoms (back, neck, eyes, bowel issues, burning leg, major fatigue) before I was given a diagnosis 😐
Unfortunately, that is about the average time to get a diagnosis. Thank you for sharing and hopefully together we can reduce the time for people to get the right diagnosis and get the appropriate treatments.
Seems like I have the same symptoms you do other than the blood clots but there's in my head terrified to leave the house blind from very active job raising children and grandchildren volunteering having my horse boarding my horse we don't see her anymore no one wants people like me
More than 20 years later of being told its all in my head.... after 15 operations in last 5 years
Sorry to hear your story Eric. Unfortunate blight on our system and the lack of education around this disease and other related ones. Thanks for sharing and for helping advocate for others. This is the best we can do to aid more people.
@@bjchealthAU im in Australia with a 1st class system....
@@user-fw3fq3de3z Hopefully AS and other rheumatic conditions will be highlighted more in the public's eye so that we can help more people. Again, thank you for sharing.
I have AS and was diagnosed very late . Now I am taking a secukinumab / Cosentyx injection.
Thanks for sharing. Hope things are better for you.
How do you feel with this medication
I’m HLA B27 positive searching for diagnosis of cause of my severe chronic pain for over 20 years now. My L4-L5 has bone spurs, scoliosis and degenerate disc. This was on X-ray only at 44 years old. I’ve also had anterior and posterior uveitis with branch retinal artery occlusion with hemorrhage. I’ve seen a rheumatologist but without the sacroiliac joint involvement and negative ANA and a normal set rate I’m sent home with no treatment and no diagnosis aside from fibromyalgia. My quality of life is severely impacted. I’m 47 now. I’ve suffered severe IBS since birth.
I don’t know where to turn. I’ve spent so much money and testing over so many years to constantly hear I have certainly have so much wrong but no specific answers. I have had varying flares of so many different symptoms over the past IDK 25 years now.
Any suggestions for what to do next would be very much appreciated. I’m just so tired of living with chronic pain and health problems. A diagnosis of anything that would finally make sense and allow me hope or at least understanding would be very welcomed!
Are there any Rheumatologist’s willing to look at symptoms and enough clinical support that maybe doesn’t exactly fit diagnostic criteria that are willing to treat for quality of life for their patients?
It's of course not really possible, and inappropriate, for us to try and give diagnoses and personal advice through TH-cam. I am sorry you are having so much discomfort. As general advice: Ankylosing Spondylitis and/or Axial Spondyloarthritis can be objectively diagnosed either through Xray abnormalities, CT scan abnormalities of the sacroiliac joints or MRI abnormalities showing inflammation (osteitis) and/or erosive changes at the sacroiliac joints. If all of these tests are negative, it would be hard to attribute the pain to these conditions.
Find a great Colon cleanser, I founded www.mycoloncleaner.com after breaking my tailbone, with A.S. and IBS (past)...Don't give up...
Get 35 grams of Fiber daily.
Helps so much, I use a Thermal heating pad for pain and Tylenol Arthritis... I took ALL of the heavy hitters...I can live safely on non narcotic meds and Yoga.
Godspeed your comfort!🌺
Christie, where do you live- if in Australia, ask your GP for a referral to a Rheumatologist, and dare I state it, maybe a ‘ youngish’ Rheumatologist may possibly be more open to hearing your story with an open and well informed mind, and also may be more open to some of the newer treatments if the regular ones don’t work well for you. Our Australian health system is amongst the best when you have the right fit between Dr, disease, and patient. The use of telehealth after the initial in depth consultation makes even geographical isolation less onerous ( and painful journeys less often) . If you live outside Australia, maybe enquire at local Arthritis Foundations or if there is an AS interest group for clinicians and patients. Don’t give up… persist to find your way forward. Good luck
Was just diagnosed after 15-20 years. Now I live in chronic pain everyday. From neck all the way down. Not to mention other joints. 😢
Thanks for sharing. Sorry to hear that is has been so hard. Hope you can try to stay positive about what you can do and aim for tiny gains. Thanks again.
@@bjchealthAU Thank you very much. I do the best I can and try not to beat myself up over things I no longer can do.
I am currently on Remicade and have noticed improvement on stiffness. I exercise everyday, which is challenging, but it does help.
I hope in the future patients are diagnosed much sooner. That is why videos like this are so good. We need to raise awareness on so many diseases.
Thank you!
@@ItsJustMe-nq1dg Nice to hear how you are going about it. Well done for staying positive. This will help many.
I really think I might have AS. Unfortunately I cannot afford to get checked out by a doctor. I don’t even have a doctor. I’m in tears as I write this, I’m so fed up being in pain for almost 10 years. Stiff pain in my back and shoulders that’s worse when I wake up, random pain that hits my buttocks and legs and feet, having to sleep with cushions under my legs and take OTC pain pills every single night just to get some comfort. But even that’s not enough now. I don’t know what to do. I need to be checked out but cannot afford it so I continue to suffer... I’m only 31, I can’t imagine continuing to live like this. :(
miss rose I’m sorry to hear about your situation. It is really tough when you can’t seek the care you need. It does take a doctor to diagnose such a condition. There are however, helpful websites. Please have a look at nass.co.uk and arthritisaustralia.com.au/types-of-arthritis/ankylosing-spondylitis/ I hope you can get some helpful information that can be a start for you.
Please see rheumatologist and get proper treatment, this can be controlled, otherwise thing will get worst after some years
So sorry to read some of the experiences people have had in getting diagnosed and living with AS. Ive been diagnosed recently. I appear to be extremely lucky that Ive had only two to three years of pain. I'm 36 years old. I have been seeing the chiropractor in that time which has helped in some ways made things worse in others I've seen the Physio and my GP. After no real diagnosis in two or so years to all of a sudden the GP and the Physio both pulling out the Ankylosing Spondylitis card in the same week. Had the gene test (to which I'm positive) and MRIs My spine is actually looking pretty good ATM but SI joints have medium to severe inflammation. Left more than the right. Since the I have gone hard with an anti inflammatory diet. Cut sugar, wheat/ grains and red meat. I take Turpentines daily. - raw phytoplankton - milk thistle - Black cumin oil, black sesame oil . Bio ready vitamins / perfect iodine. Daily apple - carrot celery and ginger smoothy with coconut water. And Naproxen.
Not sure how all the natural stuff is working but it can't hurt!
The Daily dose of Naproxen is probably biggest help. I see the specialist on the 3rd of December for a treatment schedule.
Nice comment Joe. Thanks for sharing your story. It's good to know you are being looked after and you are doing things to help with your symptoms. Well done for taking charge and trying to understand your body and what works well. Keep it up!
@@SaturatedCatthere seems to be a lot of claims on both sides of this question. Either way, personally it doesn't agree with my guts sadly.
@@SaturatedCat processed/ unprocessed . I eat Red meat and I get gut pains. I don't eat it- don't get the issues Its a closed case for me man and I'm perfectly happy without I.
@@SaturatedCat I appreciate your input/ advice mate. Have you found any other dietary things that help with the AS?
@@SaturatedCat thankyou for taking the time to reply.
Mate that's sounds pretty rough. I've been cranking product from Activation Products. Will see what happens long term. Thanks again my friend and all the best. I hear celery juice solves every problem in the known universe so Ill give that a crack too 😀
Diagnosed after a time complaining about stiff ankles that took to long to get better, than a hand and neck. So my doctor sended me to a rheumatologist he took blood, asked so many questions and diagnosed SA, he started up my meds I used to take for my Crohn’s after a time it got worse because I worked as a nurse aid at peoples home. Did had to get lesser hours to work, one day a get a nasty fall at a patience home, the medical council for the insurance claimed look it has nothing to do with you falling and holding yourself up but your illness, my rheumatologist said is she out of her mind, you didn’t have any problem halfway your back, it where your ankles, neck and shoulder later on your lower back! She’s not even qualified for this matter of illness. It got worse so asked my firm to find me an other position but they said sorry not with us, can’t even follow a retraining for different job unless I resign. What means no income. So my rheumatologist put me at home, if they sack me it cost them a lot because they refuse to give me different work or let me go back to school. I’m 53 now and some medical counseling said look stay home, you’re to old for the workforce after retraining and you’re illness will not help you find a job. And they will not pull away you’re status as nurse aid with skills in palliative care, dementia and counseling in difficult households. To much value for that sector. So picked up my hobby dogs and crafts. My kids are young adults one is out the house and son still at home but helps out, a husband that does the heavy shores. We managen well, many others aren’t that lucky. I often tell if you feel something’s not adding up, push for answers, if doctors don’t listen make a fuss and ask second opinion they will listen because often don’t want to loose patients or have to send you further on.
Hi Nancy, thanks for sharing.
So thank you to all the crappy doctors who told me it was everything from a pinched nerve to just muscle strain.....I have the gene and its positive....I suffer my son has it and my sister has it my aunt has it and my mother mom had it....its GENETIC
It is hard to diagnose at times as the symptoms can sometimes be vague. It is definitely a condition that is linked to the gene that you refer to but there are people who can have AS without having the gene. Hope you and your family are managing things well. Good luck.
As far as I can find out, and I've tried, no-one else in my family or ancestry ever had AS. At the beginning (55 yrs ago !) I had all kinds of diagnosis including misaligned joints, muscle strain... even (at 18) growing pains ! Even now, I think an AS diagnosis can take a few years. With me it took 5 years.
I am so glad to see more is being shared , better info on AS. I too found a terrific Rheumatologist who carefully listened, investigated and diagnosed me with Axial Spond at nearly 67y - after 45 yrs of miserable pains and deep fatigue. I wish I could forget the shame and humiliation I felt as a young and middle aged woman when my symptoms and suffering were repeatedly trivialised, normalised, and largely diminished by ignorant doctors . I wasted thousands on Chiropractors, Osteopaths, naturopaths, physios, and radiology examinations , and so many Drs… I learnt to be silent about my suffering, and to develop deep compassion for my life and for others. It led me on an amazing and uplifting path of professional service to others. But the cost of unrecognised and inadequately treated AS has been a huge and wide burden to carry alone. I am so grateful that a series of synchronicities led me to my Doctor. I cry with relief at being believed, being seen and understood. About to commence biologics I now have hope for my future . I found tai chi and walking really can’t tell you how sad I feel for all of us - but just know there are ways forward. I am eager for my future for the first time in decades, many decades. I can’t help but wonder had I been a young man with my symptoms I would have been diagnosed in my teens ir twenties. I still hear stories from health care colleagues where Drs don’t look fir AS in women - and see their pain automatically as ‘ in their mind’, depression related, attention seeking, malingering, drug seeking, hysterical. It’s an awful disease , but hideous when not diagnosed or managed early and well. There should be more research and education , like this you tube- fir which I am very appreciative
Thank you for sharing your story with us. It will definitely help others who may feel the same way. Hope the biologics work for you. Thanks again.
Yes.. there comes a time to speak up - after decades of quiet desperation. Why is it that even some physicians seem stuck in the rhetoric of their medical schools or teachers’ views from decades earlier . I am so glad to see the video. Only 2 months ago I sought help from ED on a Sunday, having not slept for days , in agony, with mixtures of inflammatory, mechanical and neuropathic pains in my neck and shoulders and lower back and hips, a highly respected physician stood over me , MRI report in hand, unwilling to show me the results, cruelly lied, saying ‘ there is nothing on the scan, just old age, you just have to put up with it’. This was with nerve root compressions , obvious multiple tendon inflammations and sacro-ileitis . The contrast between his lack of care ( maybe arrogance) and my Rheumatologist’s Knowledge and attitudes is astounding. So much avoidable suffering if only you could get the education out there to the GPS, the Registrars, the Physios, then we could bypass those who don’t want to open their minds and hearts to the possibility of AS diagnosis in older patients.
@@firefly5574 yes, your narrative is unfortunately so common. The best we can do is keep advocating and hopefully things will change slowly. Rheumatic disease is unfortunately a group of silent diseases which people who aren't sufferers can't see and hence does not evoke the same urgency as other conditions nor does it get the same government funding typically. We know consistent education over and over again will lead to some change. It may take years. Your story will help us keep driving forward. Thank you.
Thank you for your kindness, understanding and willingness to advocate for all of us. I do appreciate your level of care and professionalism. Thank you very much.
Just been diagnosed at 43 years old, not sure I want to watch this! Tra
Yep, I get that…. Sometimes I just don’t want to know either… but this is what I wish for you : Courage and kindness to your self first… then persistence in getting what you need - empowering you to get adequate and updated information, greater understanding of your treatment options and relatively newly available opportunities to reduce inflammation , keep mobile- all aiming to either stop or reduce the rate progress of disease , with the end game that you have your life - rather than the disease having and controlling your life…
@@firefly5574 Thank you x
I'm getting there =)
My pains started when I was in my early 20s. I'm now 37 and just now was diagnosed. I am in so much pain 😫.
Sorry to hear about your situation. Hopefully you can access a rheumatologist who can figure out appropriate management for you. Good luck
I've had several intense flair-ups in my life... I'm now 73. They've always subsided, more or less.
@@tonyday7128 Thanks for sharing
Why do doctors seem to be hesitant to make disagnois
An mri picked mine up in 2014. The hospital lost the scan and my notes and I wasn’t informed. Two weeks ago the mistake was picked up.
I'm sorry to hear that but hope you can now be on a better management pathway. Good luck with it all.
25 years and now almost completely blind because of treatments and surgery at this moment I can hardly breath I’m in so much pain. A very old and wonderful specialist looked at me and said I know just what’s wrong with you….. he wanted to hand pick a rheumatologist for me….the rheumatologist a young once student of the older man spent more time declaring that the old Dr was a dinosaur that should have been retired long ago and didn’t know what he was talking about, I was a white female it was probably osteoarthritis and put me on Humira. I said you don’t understand and explained my history. Pretty much disregarded me. I took the shot for a year. Started having other issues with my skin so I quit taking it. To many pills to many creams salves shots and even in the beginning chemo pills to slow it down… to many bills and apts no answers no help. So here I am having a pretty bad flare up and days covered in lidocaine patches and Tylenol can hardly breath and hips 😢. If someone had bothered to look beyond my eyes to the root years ago.
I am angry all the time . I have AS and ulcerative Colitis. What a crappy cards i got.
Almost a decade ago a rheumatologist told me I have AS and that it would only get worse for me. I was there for a lupus test and then was diagnosed with breast cancer. He never made any notes about it since it wasn’t why I was there and no one has ever mentioned it again.
But I was busy fighting cancer and am in chronic pain so I don’t know if it’s anything I should ever bring up to my medical team or just wait until it gets noticed again, if ever, lol
Thanks for sharing your tough journey and well done for getting through it. Please get it all checked out again with your rheumatologist. I am hopeful they can help. Good luck.
could i ask you a question i have very very severe ankylosing spondylitis and i have for nearly 18 years since june 2006 and i am really concerned about both premature death and cancer should i prepare to die very young my name is Peter McGarry from galway ireland i got it when i was 20 i am now nearly 38 what should i i do i also have Cerebral Palsy too
Hello Peter,
I'm truly sorry to hear about the challenges you've been facing with ankylosing spondylitis (AS) and cerebral palsy. It's understandable to have concerns about your health and future, especially when dealing with chronic conditions. I'll provide some general information that may help address your concerns, but please remember, it's important to have these conversations with your healthcare providers, who can offer advice tailored to your specific situation.
Firstly, when it comes to ankylosing spondylitis, advancements in treatment have significantly improved the quality of life for many people living with this condition. While AS can be associated with certain complications and comorbidities, such as cardiovascular disease or increased inflammation that might slightly elevate the risk of some cancers, it's important to note that many people with AS lead full, active lives.
The management of AS has evolved over the years, especially with the introduction of biologic therapies, which have been a game-changer for many patients. These treatments can help manage symptoms, reduce inflammation, and potentially slow the progression of the disease. It's crucial to work closely with a rheumatologist experienced in treating AS to find the most effective treatment plan for you. They can also monitor for any potential complications associated with the disease or its treatment.
Regarding your concern about premature death and cancer, it's key to focus on regular medical check-ups, not just for your AS but for general health screening. This includes monitoring for signs of potential complications and engaging in preventive health measures, such as a heart-healthy diet, regular physical activity tailored to your abilities, and avoiding smoking.
Living with cerebral palsy alongside AS undoubtedly adds an extra layer of complexity to your health management, but multidisciplinary care involving specialists in both conditions can provide comprehensive support. This might include physical therapy, pain management strategies, and possibly adjustments to your treatment plan to address both conditions effectively.
On a personal level, focusing on your mental health is equally important. Living with chronic conditions can be challenging, and seeking support-whether through counseling, support groups, or connecting with others facing similar challenges-can be beneficial.
In summary, while your concerns are valid, there are steps you can take to manage your health proactively. It's crucial to stay engaged with your healthcare team, discuss any changes in your condition or concerns you have, and explore all available treatment options. Your healthcare providers can offer the most personalized advice based on your medical history, current health status, and the latest research.
Please remember, my response is based on general information, and it's important to consult your healthcare providers for advice specific to your situation.
thank you very much for both your very kind words and your kind advice I really appcriate it also do you have a website just curious
Bjchealth.com.au
I had a useless doctor who would just give me meds to mask the pain. It was 5 years till I said enough's enough. It was by chance the doctor that wrote out the report on a blood test for something unrelated commented saying that I had the
hla-b27 marker possibility of AS. The GP idiot had to google up AS to then tell me what google. Turned out my AS had progressed to stage 3 with irreversible damage. It had impacted on my career, marriage breakdown, quality of life, and self esteem.
I still don't know if I should sue his ass, I mean it was really bad before I started taking the biomeds.
Thanks for sharing and glad that you took the initiative, educated yourself and figured out management. That's a positive! Well done.
By the way..... NEVER allow this disease to define who you are!!
That alone, make a huge difference and prevents depression from destroying your life. I refuse to let this beat me!!
Thanks for the positive comment Diane. Good on you.
I've had AS for 55 years. Although I've fought against it every inch of the way, I suppose it's defined me, in that only a certain kind of lifestyle is possible. At 17, I was very athletic and good at gymnastics. That went right out the window (except for swimming). I've had no children. I wouldn't want them to inherit the disease and suffer the way that I have. I'm an artist, (which does define me)..so that suits my condition. Although it may not have defined me, it's certainly guided me in one direction or another, through my life.
My symptoms began at 13. I waa athletic, a dancer, ate healthy and still it changed my life for the worse. I'm 53 I was diagnosed only 9 years ago when even the least skilled Dr could have diagnosed me. Decades of the medi al gaslighting me and putting me on antidepressants has alsi done damage to my trust. I have a great dr now I actually get the pain pills etc. I should have had long ago. Humira and antidepressants EVERYTHING has side effects or dependence issues and many thing I clouding no pain control can lead to addiction. My quality of life in my 50s is better than at 20 because my dr doesn't treat me like a druggie or " just" depressed.
Mine only took 20 years!
Hi Paul, yes it is terribly frustrating and is something we hear all the time. The more we can get the message out, hopefully the more awareness there will be about the disease and it's possible effects.
it took me 20 years to find out i broke my back
I was diagnosed with Ankylosing Spondylitis in 2005, from MRI, by a NeuroSurgeon. The pain was so bad by then, he put me on Morphine, as I had been on Vioxx, NSAIDS, etc. The pain is debilitating. Getting out of bed, in the morning, is difficult, even after completing spinal stretching, rib stretching, etc. Now, my spine is broken in 2 places, severe IBS, Costochronditis, 2 Spinal herniation, and spinal stenosis, and 4 pelvic breaks. Frustration, to say the least.
Oh....and my B27 is positive. Oh yeah. The rib pain I am experiencing, now.....Lord help me. My lower ribs, front and back, left sternum pain is horrific. My current doctor has run blood tests, urine, X-Ray, EKG, and heart monitor for 2 weeks. Thoracic MRI is next.
Thanks for sharing your story. Wished it was a better journey for you. Good luck with it and glad you are trying to stay positive.
Have you seen Rheumatologist - so many new medications available over the past few yrs , and if in Australia and if you meet clinical criteria ( and have exhausted the many previously available treatments) you may be eligible for biologics…
Thanks for sharing, Dr Irwin I'm from Melbourne, luv your vids. so frustrated and disappointed tried to book an app with you earlier and was told that I have to for over 6-7 months. I tried to explain my conditions to the admin lady but wasn't really helpful. I was happy to travel to Sydney meet with you or even a telehealth. I'm a young man have young family, can't really work or spend quality time with my kids and family. My health isn't improving, I was put on RINVOQ 15mg which worked at the beginning but all of the sudden stopped working, not sure why. I'd really need it if we can at least organise a telehealth and maybe consider a new biologic. Would love to hear from you soon. Thnx
Hi Kal, I'm sorry to hear your frustrations. Many of our patients are in a similar situation. Our rheumatologists are all very good and have particular expertise with AS. I have spoken to our reception team and they are offering our patients the chance to see other doctors much sooner. This is the best we can do without bumping someone else. I hope you can understand. I also see that you are on RINVOQ which means you have a treating physician already. I would suggest going to see them again and explaining the situation you are in. Melbourne has excellent rheumatologists as well. Good luck Kal. Regards, Errol Lim (Managing Director)
@@bjchealthAU Thanks Errol appreciate your reply. I'll give you a call today . Regard, Kal
Im 53, a few years ago I was diagnosed with AS after a locum doctor suggested that might be wgat I have just from looking at my crooked neck, the hospital confirmed that was the case. Knowing what I know now, I was at stage 3 then with the whole of my spinal column and neck completely frozen with no head movement. Ive read that at severe cases it can effect other organs including kidneys. Several times over the past 4 years very occasionally Id pee blood. This year, I have been peeing blood more regular, and recently I have been peeing congealed blood with my pee. I have no friends, lost them all because they have all moved away. Because of my clinical depression, social anxiety and pain I never got a new social group, been totally on my own/ My 2 cats I know have kept me going. I havnt had the blood in my pee checked out because I cant get to the doctors early in the morning as I feel too ill when I wake up, and the hospital is too far for me to travel on public transport or taxi, I feel so ill when traveling. Im worried my kidneys are possibly packing up or I may have bladder cancer. I never went for any possible treatments earlier because if I need a stay in hospital id have to get rid of my cats, and they have only ever known me, and I know they have saved my like from depressions and give me a purpose to get up most days. I now things have now got serious, dont know what to do because I cant get to hospitals, and the pain I experience from my AS stops me going to hospitals etc, I just wouldnt be able to handle it. My cats are 10 and 7, I dont know who is going to last the longest me or them. I worry for my self and what will happen if I have to stay in hospital, eventually I fear there in the near future I will have to go to hospital and and wont come out, what will happen to my babies. I know I wont reach 60, Im at a total loss, Im totally stuck, I have no help, I dont know how to get help because im house bound. I live in London UK. This is the first time I have told any one about this. Sorry for the long winded babble.
I'm sorry to hear about your situation but thank you for sharing and your courage. Not sure how much we can help here but I would like to point you to nass.co.uk They have a helpline and since they are UK based, they may be able to provide you with some advice and better support.
i just diagnosed with AS, HLAB27. i am only having pain in sacroiliitis joint spine and hip joint x ray is normal Only MRI of sacroiliitis shows inflammation in muscle. The good thing is i am in very early stage with very least pain. suggest me what to do Now to not form the bamboo spine forever. swimming could be best i am doing anything else.
Thanks for sharing Rupesh. Keeping mobile is the key and keeping the inflammation at bay. I would suggest continuing to see your rheumatologist so that the both of you can decide on the appropriate medication to be on. In the interim, maintain flexibility through your neck, upper/lower back and hips with exercises. We've created a playlist here of the gold standard movement tests for AS - th-cam.com/video/B9RaFB5BwrQ/w-d-xo.html. Whichever movement you feel is stiffer is the one you should work on.
As part of a general exercise program for AS, you should also consider doing some strength based exercises as well as some aerobic exercise (eg. swimming is good for this component of exercise). Hope that helps.
@@bjchealthAU thanks for replying and the main thing I suffer in this disease is mental health overthinking makes me like I am the unluckiest person why this is happen and all hu now I am good. Agin thanks for this playlist.
@@_rupeshchauhan acknowledging how you feel is the most important so you've done that. Well done. Hopefully, you can turn your feelings to being positive ones as many people do really well even though they have AS. If you follow cricket, big names that have played in the past have AS - Michael Atherton & Michael Slater. Well publicised. So, much to look forward to. Keep active and keep discussing things with your healthcare team. Good luck.
I have a question regarding AS. is there any sign or changes in our back during development phase of bamboo spine? If there is any how can I prevent it. I don't want to enter in this stage can you please help me.
@@_rupeshchauhan In this day and age, if you get the appropriate management (drug therapy & exercise) and are regularly followed up by your physicians, then bamboo spine is definitely preventable. Your symptoms and the mobility assessment I shared with you are good ways to make sure you stay mobile. A physician may send you for a specific MRI to check if you have inflammation at the SIJ (sacroiliac joints) but again this has to be matched to your symptoms and how you are moving. Waiting to see changes on X-rays means that the extra bone formation has already occurred. Hope that helps a little.
Was diagnosed in 2020 with AS which is very serious, have to wear a lumber back brace, I am in my early 60's. This is very painful
Thank you for sharing. Sorry to hear about your situation. I hope you are getting some treatment to help and are seeing a rheumatologist.
@@bjchealthAU Am receiving treatment from the State (government) hospital and they can only do so much to help.
@@marilynfourie2651 hopefully you are being seen by the rheumatology department there. I am hopeful they will do the best they can. Thanks again for sharing.
Hi there is a herbal cure for AS , I was recently cured using dr nafuar herbal medicine and it worked now I’m perfectly okay
Is there a more recent follow up video that describes the role and availability of some of the newer biologics? It would be great if it followed on from this one here, which is a very helpful video
We don't know of a follow up video that describes the huge array of biologics and specialised DMARDs. Our friends at CreakyJoints have attempted to collate some information on their site and in particular, there is a great patient guide with a section of these agents - creakyjoints.org.au/pg-axspa/
Hope this helps.
Thank you
Excellent link: Just read the AS Ebook on the Creaky Joints site. Really useful information, easily accessible, with enough detail. Much appreciated - thank you very much
I believe I’ve had this for over 10 years. Does anyone else have painful legs that can be sore to the touch?
That's what I'm dealing with because its being caused by having to position my leg a certain way.
Maybe see a Rheumatologist. Sometimes chronic pain and insomnia can also contribute to another weird and painful and much misunderstood condition fibromyalgia ( which can lead to awfully tender spots scattered across the body) . but I also wonder if inadequately treated, chronic unrelieved pains, from AS , could lead to a strange wind-up of pain pathways where light touch gets recruited into the pain pathway? And, I wonder, is it actual AS inflammation in those tendons you are feeling? … or does actual muscle pain and inflammation occur across the connective tissue network across the surface of the muscle somehow gets inflamed too. I know I have the same awful tenderness, can’t tolerate the discomfort of firm massage only on my legs . I don’t understand it either. But real it is… I get so embarrassed by the myriads of physical complaints , that I still keep quiet about the breadth and level of pain and suffering I experience. But, we are no longer alone in our suffering…
I am suffering from joints pains from the age of 14, at age of 27 i was diagnosed AS but it was too late, my left hips is freezed, my spine is like a rod, my both knees joint space reduced. Both of eyes suffered with severe Uvitis, and now inflammatory Bowel is active. I am really frustrated from my difficulties
I'm sorry to hear how difficult it has been for you. I hope you are still able to get some management to help you a little and make things a little more comfortable. That you for sharing your story and reminding us about the importance of early diagnosis.
My x rays show fusing off the SI joint. I sure hope my doctor understands that.
I hope they appreciate too. Thanks for sharing and good luck
I'm 19 and I have it
How come they don't provide adequate treatment/ help after the late diagnosis (24 years)?
I had to stop at 1:53, it's taken me 30 freaking years to get a punctilious diagnosis. I cannot tell you how much pain emotionally, socially let alone physically I have gone through... on my own... It's funny that I had my diagnosis with a rheumatologist who put my case before a panel of rheumatologists only to be told it may have been a congenital condition, that it wasn't inflammatory and that there was nothing more they could do for me... at least I can still touch my toes.
Sorry to hear and thanks for sharing your story. Hopefully, your situation can help more people to get diagnosed quicker. Good luck with it all.
@Brett Perryman I was wondering, do you have issues with the muscles along both sides of your spine super stiff? I am trying to get someone to listen to me about this. I had an orthopedic doc tell me ( my back) was a huge mess and there was nothing that could be done for me. I cannot stand for more than 5 minutes on a hard surface, I lean a little to the right to take pressure off, because i have issues with my SI joints. I do have seronegative Rheumatoid Arthritis. This pain in my back has been unbearable for 17 years. I also have the neck issues. Surgery on that last year. I cannot sit on my butt flat either. Have you experienced any of this? Thanks. I am at a dead end.
@@Justagirlnamedshawn I have trouble with stiffness quite a lot, however on a psychosomatic level its hard to separate from being old or just general stiffness. I try not to let my reaction amplify my experience, so I try to take a dualistic state and just let it happen. Stiffening against the pain can be just as bad as the pain. So, relax into it, its counter intuitive I know, but its the best path
Misdiagnosed misunderstood. Severe pain. My life is over. I have autonomic failure and multiple fused back. I cannot walk I have heart failure. I have paralyzed stomach. I have no king to live. It doesn’t just attack the spine. I have children I hope they don’t feel this!!!!!!!
Don't leave hope, see good rheumatologist, it can be controlled
Heya, I’m 25 and discovered a fused disk when I was around 13. The spine doctors were perplexed, and never mentioned AS. They didn’t recommend a rheumatologist either. I’m wondering if it is AS. Is this possible? Apparently I went to the best spine doctors in LA. Is this a newly characterized disease or something?
Hi Michael, it is not a newly characterised disease. It's been around for a long time. Unfortunately, it is still misdiagnosed throughout the world as it is not something that many clinicians think about. It is hard to say that you have AS just from what you have written. The criteria for AS typically looks at the sacroiliac joints (SIJs) and if these are fused then there is correlation here. Symptoms of AS are typically stiffness in the mornings, pain at night, symptoms improving with activity/exercise and hence worsen with rest, and buttock pain that can alternate from side to side. The main specialist that you should see if there is suspicion of AS is a rheumatologist. Hope that helps. Thanks for sharing.
No Michael AS Is not new it's been around forever. It's just incompetent doctors that's all. Hope things are going better for you.
I can't believe how this condition can go misdiagnosed for so long by multiple Doctor's. Can AS, effect your prostate with systemic inflammation? Thank you.
Ankylosing Spondylitis can be associated with inflammation of the urethra ie urethritis and has been associated with prostatitis.
Truly? I get awful urethritis, cystitis symptoms - without infection. Could this be related?
Merci Docteur!
My GP Kept fobbng me off Symptoms started age 20 diagnosed age 32 hip replacement at 37 and again at 56
I’m wondering if I have this. I have stiffness on my left side back and my left hip hurts. The pain is bad around 3-4 am and wakes me up. It might take hours to get back to sleep. When I get up and move around it’s starts feeling better. It’s been 3 1/2 years of this and seems to be worsening. I thought it was piriformis syndrome from all the running I do but the stiff left side back doesn’t make sense w that. I’ve taken a break from running but it’s still hurting at night.
Hi Christine, thanks for sharing and for your question. You seem to have signs and symptoms of inflammation. I would recommend seeing a doctor and preferably a rheumatologist to make the diagnosis or re-assure you that you don't have AS. Here's a simple symptom screener that may just help a little bit more - dontturnyourbackonit.com.au/symptom-screener.html
@@bjchealthAU thank you’re your response. Yes I have a GP appointment coming up and I’m asking for a referral and an mri so they can actually look in there. About 2 years ago my back locked up on me and left me hunched over for one week! This happened after driving for 8 hours. I was on a trip so I had to go to an urgent care clinic. They gave a shot in the butt, ibprofren and a muscle relaxer, none of which helped much. I’ve had episodes like this one maybe three other times in my life. Something is going on in there.
@@christine9467 Actually, you can have acute back pain episodes and have nothing showing on MRI. People get back pain for many different reasons and it doesn't have to be pathological. Seeing health professionals that appreciate this is critical. Good luck with it all. Whatever it is, I hope you get the rehab you deserve. Be positive and there are plenty of reasons why you should get back to what you love to do.
@@christine9467 hi how are you now? I am having similar symptoms.
@@moniquefacey5760 I’m actually doing better now. I chickened out on going to my doctor because it was a new one. My husband had gone and he said she was really good so I rescheduled for February 🤦🏼♀️. But…I recently started going to our neighborhood workout room and started working out on the elliptical machine and my hip is starting to feel better. I’ve even laid on it a couple of times!!! Someone on another thread said I may have a tight IT band 🤷🏼♀️. So I’m going to continue with the elliptical and stop the running. Every time I go run, that hip flares up. So maybe I don’t have this condition hopefully. I will mention this problem to my doc when I do go this time. I hope you get some relief and find the solution. It’s so tough cuz there are just many muscles and nerves that it makes it super hard to combat the problem.
Are you in the uk??? I’ve had pain for 8 years - currently on 33 tablets a day..... can I come and see you for a diagnosis xxx
Hi Emma, sorry to hear about your situation but unfortunately, we are in Australia. However, the National Axial Spondyloarthritis Society (NASS) is very proactive in the UK and have great information on their site - nass.co.uk. If you contact them, I am sure they will be able to point you in the right direction. Good luck.
@@bjchealthAU ok thank you xxx
you got that right Doc! had been to every doctor that you mentioned. let's not forget the the ones in between the call you a crazy person and you couldn't be in the kind of pain you're saying blah blah blah. I'm in the neurosurgeon to tell you need Fusion in your neck and your lumbar I chose not to do it thank God did not know I had this at the time! longer story short I was not diagnosed until after all my research took me to a top rheumatologist now I have been to two rheumatologist prior one said fibromyalgia like I had never heard that before give me a break!! and the other just thought I was full of osteoarthritis.. now every rheumatologist agrees with the rheumatologist who diagnosed me so I can't quite figure that one out?? just diagnosed in 2013. but I probably had the onset was ages 11 to 12 somewhere in there. so basically I went 34 years without a diagnosis! it was only from 2002 to 2013 that is had progressed so intensely that I'm not able to work anymore and was getting wrong diagnosis is for that time. So yeah you're right. so much needs to be done for awareness and I hate to say it but I've seen rheumatologist since uh my diagnosis and they don't really seem to know what to do with an advanced progressed person! I haven't got flares I guess that's what they're called since about 2002 my pain and stiffness is constant my whole entire spine from the SI joints all the way up to my neck both shoulders and both hips and the middle of my spine is just so flipping painful.. horribly deformed I did not have bad posture.. so yeah I know what you're saying I wish more rheumatologist would do their homework and because the three I have seen since my diagnosis certainly weren't up on Spondylitis whatsoever very disappointing.!!! but thanks for doing your video really appreciate that!!
Thanks for sharing your story. It will go some way to helping those that have pain and hopefully inspire people who read your story to keep searching for the answer. Stories like yours help to build awareness and we should hear more of it. Thanks again for sharing.
thank you for that I hope more people see your video.. and as you talk about exercise that reminds me I forgot to put that the only thing I'm able to do is I get in a heated pool.(it has to be heated cold water makes my pain way more intense). I'm not able to get up out of a bathtub so I don't take baths) and I'm not a overweight person by the way).. I do 30 minutes of stretching exercises that a physical therapist showed me to do in the water and then I do 30 minutes of lap s... and let me say I was NEVER a swimmer prior...now I did plenty of land exercises in the eighties and nineties aerobics Jazzercise exedra .. always worked at practicing good posture actually 2...so I was always a very active person I think that's one reason I didn't progress as fast as some but that's just a thought? from ages of like 11 years old to what 46! but it's still it was not constant...and I think I forgot to mention I get fractures very easily in my spine it doesn't take ANY kind of trauma that's what terrifies me cuz they are moving up towards my neck! and it's really crappy when you know you have one and they can't see them on the film!. thats what happened back in 2002 I was working and living in the state of Mississippi I kept telling docs it was broken. I would say i had a broken wrist years ago and I knew what a fracture feels like...they just thought I was a crazy person so unfortunately they were not seen until I moved back home to Colorado 7 years later. there it was plain as day on the film old transverse process fracture L3-L4 so by radiologist and Dr s and not addressing my fractures... NOW I have scoliosis. which I know it's mechanical and has nothing to do with the spondylitis. but still now I'm deforming in two different directions right? I've got another fracture in the middle of my spine I felt it happen I know it's there but here I am in The Good Old South again where they apparently don't know how to read freaking film.. LOL but it certainly isn't new it happened four years ago. anyway thank you for what you're doing really appreciate it I hope more people see this. you know the other bad thing. that's unrelated to the Spondylitis but is related to it really.. due to the fact that I was not diagnosed for 34 years.. I had a good 20 more years to work I was only 46 years old when I had to stop working had I known I had this I wouldn't ever been doing the type of work I was doing for one thing just a lot would have been different. so you know I'm pretty much ruined financially because ever since then I've had to live on a very low limited income is very hard.. so not only the pain and stiffness is 24/7 I just turned 60 it's just it's not fun anyway you look at it LOL.. but I would encourage people to get into a heated pool specially if you're not able to do land exercises anymore I mean it doesn't take all the pain away and stiffness but it is lessened for a short time. and I'll take temporary over nothing at all any day!!
Once again, thank you for sharing. Really appreciate you taking the time to detail your story so others can learn. Lets hope we can prevent others going down the same path.
ssue same here. I kniw it began when i was 13 and i was diagnosed at 44. The damage is done but it's not over. Just in the last 5 years i developed a hunch back. When i finaly found a doctor who was a OS and fairly young and very knowledgeable i was properly diagnosed. I cried when i found out the name of what i had been living with for most of my life. Since then, i have been learning as much as i can about AS. I read stories of people with AS and know i am not alone. I have a doctor who is not afraid to prescibe opioid medication and with that i am able and motivated to do physical therapy exercises alm ok st everyday. My reumarogist has me on humira. I didn't like the potential sude effects but i weighed those side effects vs AS getting worse by fuseing nerves and making me incontinent. My neck, although it has problems, isn't stuck looking downward. I want to keep that from happening. My heart was damaged by AS with mitral valve prolapse but the doctors say it's only a mild problem. I want to keep it that way. So, like anything else i must weigh the pros and cons. Same with prolia. Living with AS has made me go from a healthy teen who loved to dance, training for recitals and competitions everyday, being a team player in sports, and being overall healthy and active, to a depressed teen who avoided the pain of being active. I managed to keep fit but i also developed osteoporosis before 40. The activities that strengthens bones are painful and not advised when the spine has no cushion and is fused together. My rheumatologist says he wishes he could have started me on humira 15 years ago. I wish that too. I also wish that people would be able to experience the pain of others, even if just a few minutes in order to build empathy and understanding. Because in my experience, there is a considerable lack of those qualities especially in the people whose job it is to care for others. And especially now days when pain medicine is demonized. People who are sick need a toolbox of options and a team of advocates. The majority of people are gong to need this help at some point in their life. I would hope that as we advance in knowledge and technology that healthcare shows improvements. But lately i see doctors being told how to treat by insurance companies and public empathy being replaced with hysteria. Anyway, i am deeply appreciative to everyone who shares their story and builds awareness.
i have suffered for many years with lower back problems , can some please let me know it these sysptoms is AS because i am ready for the hills , its been 30+ years and on my last bad flare up 3 weeks ago i wanted to end my life , but it was all the meds i got , pain killers and diazipan sent me doo lally AGAIN wanting to end my life
my symptoms
I feel like my pelvis is splitting up the two sides inner groin
my hip bones feel like they are burning through my butt cheeks
bending . putting socks on etc hurts
my back goes into spasms
my arms get weak
standing make it worse
moving seems to make it a bit better but once i stop its like every wee bone in my lower back has dried out and im stiff as a board again and can barely walk
Hi Pat, sorry to hear you've had such a tough time. It's hard to truly diagnose you and be safe in this forum. Your symptoms do suggest a case for AS but I would recommend that you seek advice from a rheumatologist. They are the experts in this field. A series of questions matched with some investigations should allow them to confirm a diagnosis. Good luck with it all.
Late diagnosis/no diagnosis is common practice in Australia. Drs here are too lazy to fill out forms, when you ask for something it's like you're asking them to cut off their leg 🙄
Just 35 years late for me. :-(
Never too late for demanding better pain management and requesting medications aimed at reducing inflammation especially during flares
Sir when the osteoporosis occures? I mean i have diagonosed with that disease and it is in early stage so, when is the possibility to grow osteoporosis?
I need to know how to
Treat it ?
That's a big question. Perhaps the following link www.bjchealth.com.au/ankylosing-spondylitis?hsCtaTracking=5f7e91b9-2d76-41eb-9d05-bf133024b934%7Cce4e1d93-605b-4cd9-9fce-42df8e3b354c will help answer some of your questions. You can take the time to go through the information and appreciate the complexity of management.
Why is Dish Spine which mimic AS so difficult to treat?
Thank you in advance.
DISH and AS are different diseases so unlike AS, DISH does not have the same autoinflammatory features and hence the targeted specialized medications do not work with it.
I have bone marrow edema, erosions, subcondral sclerosis and other findings along with many symtomps... I feel like crap and I feel my spine is boiling!! my dr will only look at HLA b27 wich is negative.
What can I do??
Oh and 2 fingers are ”crocked” now 🙄 I’m 36 years old....
@@sandrak9173 sorry to hear about your situation. When you say doctor, I'm not sure what sort of doctor you have seen but I would suggest seeing a rheumatologist. They are the ones who specialise in Ankylosing Spondylitis and other inflammatory conditions. And if you have seen one already, perhaps seeking a second opinion. Please keep looking, there are great doctors out there. Good luck and thanks for sharing.
@@sandrak9173 how r u ?? I too have sacroillities bone edema, hla negative, doc says I have mild arthritis
I am also have this disease as. From. 17 year to till now. I am. Now 19 year old.. Is possible to cure my problem.. Or not?. Because i am in medication for past one year.... Please suggest some.. Treatment to cure..
Unfortunately, there is no cure but there are medications and treatments that can help switch off the inflammation in the body significantly. It will be too hard for me to list and hence I have provided you a link that may be helpful with information on AS @t Good luck!
What if you have never gotten an diagnosis from a doctor, and you have a lot of pain throughout your body and now are too old for exercise lam 74 years old, have been in pain all my life , disc problems as a young girl diagnosed with those problems in Europe my mother was Dutch when we went to her country as children the Dutch Doctors diagnosed me with some form of disc issue whenever we returned to the states there went my care , l have suffered ever since, basically been trying to diagnose myself, all my symptoms are going towards Ankylosis Spondylitis, l would not want to go to steroids now but l would like for my excruciating pain to be eliminated please advise me as to what I should do thank you and God Bless you 🙏
Firstly, it's never too late. Getting an opinion and a possible diagnosis is still important. This allows targeted management. There are many different medications these days. Plus exercise can be done by anyone of any age. It can still have very positive effects irrespective of age. Small steps always to begin with. Please see a rheumatologist and go from there. Good luck.
You can reverse your Ankylosing Spondylitis by changing your diet which involve stop eating gluten foods like wheat, rye, barley, stop eating grains like rice, corn, oath, stop eating night shades like pepper, white, red or yellow potatoe (you can eat sweet potatoe), stop eating vegetable oils, peanut, stop eating fried foods. stop eating processed foods, stop eating white sugar, stop eating pasta, bread, dairy (milk), eggs, chicken. You can make smoothies like blending green vegetables like kale, spinach, cucumber, you can also cook vegetables, eat a lot of vegetables, eat coconut, avocado, eat home prepared/made whole foods like sweet potatoes, yams and beans. You can also do exercise like walking, cycling
I think eating an anti-inflammatory diet can help reduce the effects of having a condition such as AS or the broader spondyloarthritis. For some people, it works better than others. Once we have structural changes and bony fusion, I have not seen "reversal" of the disease. I think people can feel better and move better despite having scans that show changes to the bones/joints and definitely exercise and dietary changes can have a huge effect.
I have lumbosacral stiffness and slight pain for more than a year specially when i bend forward, sides and backward. MRI si joint & lumbar were normal, all my blood test are normal, persistent lumbosacral stiffness and slight pain with movement. Is this possibly eatly sign of NR-AXSPA?
It could very well be but considering you have done all the correct investigations and checks, you should have the confidence to continue doing what you want to do in life. I am making the assumption you have seen a rheumatologist and discussed your biomechanics and general movement patterns with a physiotherapist. If not, I recommend you seeing them as it is hard to give you any specifics on such a forum. Thanks for sharing.
You are so right I in such a pain on my spines
Hope you can receive the appropriate care. Good luck with it all.
Hi. Wondering if it's worth me getting a second opinion. A rheumatologist diagnosed me with AS recently in my 30s, and while I showed some of the classical features of AS i also have things such as:
No spinal pain, no elevated crp
Irritated areas seem more in the left rib and right hip (started in the SI joint and then with physical exercise very quickly resolved and moved more into the general hip).
Pain doesn't feel inflammatory, and doesn't respond that much to NSAIDS. responds to muscle relaxants such as norgesic better.
For a period of time was waking up with stiff muscles, however pain never felt joint related.
Floatation tank therapy helped relieve a lot of the muscle stiffness except around my rib.
Exercise such as yoga and swimming is what I do, although they are more likely to cause irritations to hip and rib rather than make me feel better physically (of course they make me feel better psychologically).
I felt the rheumatologist was very quick to put me in a box rather than listen fully to me. Also, prescribed sulfasalizine but I thought this was not considered useful for AS?
Hi Arun, thank you for commenting and your queries. It is very hard for us to comment on your symptoms online and make judgement about your management. The best we can do is say that if you are unsure, it is worthwhile seeking a second opinion. It may also be worthwhile seeing a physiotherapist who has a special interest in AS as they can do some baseline measures and help track them over time to see if your condition is being managed well. Unfortunately, I am unsure how easy it is to have access to such clinicians in your part of the world. Good luck with it all and keep doing what makes you feel good both mentally and physically.
@@bjchealthAU yes I will do. I'm in Sydney. to me however the attitude of some rheumatologists to quickly put people into a box rather than look at things more holistically, and label things very quickly is exactly what gives many of you a bad name! I'm notsuggesting to tar all rheumatologists with the same brush but my experience with them to date has not been great
@@arunr5529, I respect your opinion. It is unfortunate that has been your experience to date. There are many great rheumatologists out there.
How long does it take for the spine to become permanently stiff from this condition? Would it be unlikely to happen after 6 months or so?
If you get the right management specific to you and you remain active and have tailored exercises, there is a good chance you do not have to remain permanently "stiff" or ankylosed. It is hard to answer your second question as it would depend on how long you've realised you've had symptoms, the severity and whether you are getting appropriate treatment. I would say if you got diagnosed early and then managed well, it would be unlikely.
Hello my name is Peter Mcgarry what is the evidence of cancer in patients with Ankylosing Spondyitis
The data seems to be quite conflicting and overall, there is not thought to be any clear cut increased risk of any particular malignancy. What is clear is that uncontrolled inflammation, particularly with high inflammatory markers signalling systemic inflammation, does increase cardiovascular risk. Dr irwin Lim
I was diagnosed in late 30s, had it very bad but 3 years later after losing some fat, exercising regularly and taking Ayurvedic medicine as well eating healthily I no longer have major issues. In fact I feel 21 again
Which medicine n diet ? Can u plz share?
@@ricelover510 go 90% vegan, eat meat maybe twice a month, use non comedogenic oils in foot, eat nuts and seeds and grains, never drink fizzy drinks, eat avacados, plenty spinach and kale etc, mushrooms, fruits. Use food as medicine.
Use garlic as medicine in morning crush one clove and mix with one tspoon of local organic honey and 1/3 tspoon of curcumin, swallow with warm water, enjoy
Hello brother..where are you from and where did you take ayurvedic treatment? Waiting for your reply
@@hotenmak5209 Hello brother..where are you from and where did you take ayurvedic treatment? Waiting for your reply
@@rammohanragu1865 UK, I created my own Ayurvedic medicine using 3 of the most important foods with the best anti inflammatory properties, garlic, organic local honey and curcumin(pure turmeric)
if you have all the other findings but a negative hlb27 does this then rule out A.S?
Unfortunately no, you can still have AS even if the test for HLA B27 is negative
Apparently no. 90% of the people with AS have HLA-B27. So 1 in 10 people with AS might not have the human leukocyte antigen.
I am 26 and single suffering from Ankylosing spondilitis . I got to knw about as at age of 23 now it's Getting worse. Spine stiffness is getting worse day by day, can't move my neck properly. Day by day I am getting depressed and worried about my future as in india marriage for girls is very important. Don't knw what to do. Give some advice please
Hi Nidhi, thanks for sharing but at the same time, sorry to hear about your situation. I think the best we can say is for you to find a doctor locally who understands the disease. It sounds like you have been given the diagnosis so perhaps trying to reach out to that doctor/rheumatologist again and see what medications may work best for you. Below are some links you may find useful for general management and also for basic exercise:
- arthritisaustralia.com.au/get-support/resources/working-out-with-michael-slater/
- nass.co.uk (this group have an app with exercises on it too
Good luck.
@@bjchealthAU Sir thanku for your reply and also thanku for sharing this vedio 🙏 sir, doctor had gave me a painkiller which is not good for kidney so I am not taking it and he told me do excercise also told me to reduce body weight .
@@nidhiseth7668 glad to hear that someone is across your management. I would keep in touch with them and take on the advice of exercise and eating more healthily. Once again, good luck with it all.
Have you considered going off gluten and dairy? I’ve ankylosing too, diagnosed just 3 months ago. My flares are not there ever since I have gone gluten and dairy, pepper too, tomatoes too. All are bad bad now. Body doesn’t like it. Try and change your diet
@@mytravls no dear , I am following my normal diet as doctor told to reduce weight and also told to do excercise regularly. I will try what your are telling.
thx u sooooooooooooooo much