6 Facts about Ankylosing Spondylitis

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  • เผยแพร่เมื่อ 15 พ.ค. 2024
  • A diagnosis of ankylosing spondylitis can be very confusing. Is it the same as RA? How do I know when I have it? Learn the specifics here and understand when you need to talk to your doctor.
    ⏱Time Stamps:
    1:38 What is AS and which joints are affected?
    2:37 Men are affected more than women. But don't forget the ladies!
    4:07 AS is not "RA of the back"
    6:00 AS is a seronegative spondyloarthropathy
    8:05 The right questions can help make a diagnosis
    8:40 Which questions to ask
    10:45 the HLA-B27 blood test
    🎥 watch more:
    6 Facts about Psoriatic Arthritis: • 6 Facts about Psoriati...
    5 Clues your back pain is more than just back pain: • 5 Clues your back pain...
    5 Lessons learned from going to Physical Therapy: • 5 Lessons Learned From...
    4 Ways your Arthritis can Impact your Heart: • 4 ways your arthritis ...
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    About me:
    👩🏻‍⚕️ Hello! I am Dr. Elizabeth Ortiz and I'd like to thank you for stopping by Connected Rheumatology. I am a board certified Internist and Rheumatologist with over 12 years experience practicing Rheumatology and am passionate about teaching & empowering patients to partner with their doctor.
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    * The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional. Any comments and/or recommendations made in the comment section by anyone other than Connected Rheumatology does not reflect the opinion or recommendation of Connected Rheumatology.*

ความคิดเห็น • 283

  • @kimberlypuravida5690
    @kimberlypuravida5690 หลายเดือนก่อน +3

    It took me 30 years to get a diagnosis. I was disregarded, given medications, and treated like a hypochondriac. I was not paid attention to. Finally my cell phone after multiple years of searching butt pain, tail bone pain, low low back pain why does it hurt so bad, my cell phone kept sending me notices about Ankylosing Spondylitis that I was ignoring. Then 1 night I opened it up and looked at it in the middle of the night when I was in pain and couldn't sleep. Sure enough I read myself, I read my condition, I read everything I've been suffering through. I made an appointment with a rheumatologist went through all the testing and was diagnosed with AS.
    I am so thankful now for the privacy invasion of my cellphone listening to my conversations tracking my search history and discovering my conditions before any Doctor had.

  • @anitaboddie63
    @anitaboddie63 2 ปีที่แล้ว +84

    It took me over 25 years to get a diagnosis. I had them tell me that I was a hypochondriac. It took a dermatologist to diagnose me with psoriasis to start the ball rolling.Since my diagnosis I have also been diagnosed with Psoriatic Arthritis, Graves disease, hashimotos, and sjogrens. They are watching for more to develop.

    • @sharonvaldez9059
      @sharonvaldez9059 2 ปีที่แล้ว +12

      Same…started around 12 (when I was diagnosed with rheumatism, and I’m 48 now…diagnosed last year with Fibromyalgia, Sero-negative RA 3 months later, and 2 weeks ago Sero-negative Sjogrens. I guess my 30 minutes was up because he didn’t listen to why I feel I have Lupus and the whole thing fall under MCTD. I didn’t match myself to the symptoms until I started hearing others share their journey and heard myself in different parts of a lot of their stories. My eyes just ran with tears…literally before my brain registered what I was hearing. I will advocate for myself and speak up when I have more to add to the physical exam and the bloodwork findings. My current RA Dr told me my tests were negative for Sjogrens and Lupus when I directly asked him about my timeline and symptoms. I have educated myself enough that I asked him if he is basing that off of the bloodwork, and he said Yes!!! I informed him that I didn’t understand how he could come to that full diagnosis since he was only taking into account his physical exam, and the bloodwork. I told him the symptoms count as points even when blood tests are negative for activity. I showed him the spreadsheet that I created, FOR HIS QUICK CASE SUMMARY FROM THE PATIENT. He then stated that his conclusion is that I now have RA and Sjogrens…he rushed out so I didn’t get to show him the lupus symptoms spreadsheet.

    • @colossalbear2037
      @colossalbear2037 2 ปีที่แล้ว +8

      I feel your story. My journey to a diagnosis started with an routine eye exam.

    • @melaniemccallister2372
      @melaniemccallister2372 2 ปีที่แล้ว +4

      Can you give any advice to another women to be looked at from bone and spinal hx and 3 surgeries in 4 years. It scares me I am going to keep getting worse every year til some Dr will listen without being crazy

    • @melaniemccallister2372
      @melaniemccallister2372 2 ปีที่แล้ว +3

      I guess my whole message printed or I didn't read bc of eye issues that are told to be as old age that didn't happen over years but suddenly as the other symptoms made me stop in my tracks because of it changing me living my normal life

    • @newdawnforall6264
      @newdawnforall6264 ปีที่แล้ว +9

      Same here. Started my search for a diagnosis aged 18. Now 50 and have spent most of my life in terrible chronic pain, unable to work. Gave up on Doctors decades ago. Just heard about this condition and all the symptoms fit so I am am going back to the Docto see if I can get tested.

  • @anniepruett5925
    @anniepruett5925 ปีที่แล้ว +46

    I was told in the early 90s AS was a man’s disease. I suffered for decades. In the 2000 I was diagnosed with a somatic problem. “All in my head”.
    Misdiagnosed with Guillan Barre and hypochondria. I’m so ashamed at the dr’s of whom supposedly cared for me. I’m was made to feel foolish and a liar. I have a brother and 3 sisters that are hla-b27 positive, they suffer as well.
    I am now bedridden and unable to walk. I have a caregiver to assist with simple needs.
    I’m am a military veteran and treated inappropriately by the medical field.
    Such a sad sad situation. Shame on ALL the doctors who shamed me.
    Yes, I am righteously angry.

    • @justagirlnamedshawn
      @justagirlnamedshawn ปีที่แล้ว +2

      I am so sorry you have been treated this way!! I have a plethora of issues and I am so discouraged by not getting more in depth testing by doctors. I am EXHAUSTED!

    • @janetphillips2875
      @janetphillips2875 9 หลายเดือนก่อน +2

      I am so sorry you are being treated like that! These days, doctors see so many people, that you're labeled a dopehead the minute you walk in!! As for me, I'm sick of Dr's and hospitals treating people like that! But, we can thank the abusers for it!

    • @southernlady5085
      @southernlady5085 6 หลายเดือนก่อน +1

      Bless you, Annie. My heart breaks for you.

    • @tammyque1506
      @tammyque1506 5 หลายเดือนก่อน

      Upon returning from deployment from Iraqi 2007, my whole health fell apart and I was a marathon runner. I had a hell of a lot of pain of my right shoulder, neck, and lower back from an injury I sustained in Iraq. Because of my complaints of respiratory problems, symptoms of MS, and body aches I was diagnosed with Somatoform from a VA psychiatrist. Had to go outside of the VA to only find out I have sleep apnea, asthma, optic neuritis, demylating of disease of my brain, positive spinal fluid protein, and AS. Somatoform is a bad label to give a patient because you're mistreated by doctors especially by VA doctors.

  • @trailrunningphil
    @trailrunningphil 2 ปีที่แล้ว +37

    I’ve had psoriasis, knee pain, ankle pain, tendon pain and even chest pains as well as the spine pain and until I started watching videos like this, I didn’t know they were ALL connected to having AS!

    • @barbararadzeviciusbondi4150
      @barbararadzeviciusbondi4150 ปีที่แล้ว +3

      2 of my brothers have AS probably more severe than me. Fusing discs and chronic pain. Our immune system has a lot of information encoded as markers and potential to cause us pain. Do you have the HLAB 27 marker? Best wishes and hope you're well.

    • @trailrunningphil
      @trailrunningphil ปีที่แล้ว +4

      @@barbararadzeviciusbondi4150 Yes I do Barbara. By staying fit and healthy, Im not currently suffering any back pain but ALWAYS have pain in my ankles. I do alot of trail running to keep active and im sure that is whats causing it, but would like to know from medical professionals whether it is the AS or my preferred method of keeping fit! Thanks for replying.

    • @flyandshy00
      @flyandshy00 7 หลายเดือนก่อน

      I also had psoriasis, but I noticed it noly appeared when I ate milk products, try to eliminate them.

  • @becd7140
    @becd7140 ปีที่แล้ว +26

    I’m 48 and have suffered with this all my life. wow. it is extreme! i’m currently in a flair. been going on for 12 months now. it’s taking all my strength this time. it’s getting harder each time. you just can’t describe it to anyone unless they suffer it. it’s different from the other back, joint pains. then there’s the stomach and heart issues too. if you know, you know. i’ll be ok when this all ends. i’ll be well and truely worn out just from the chronic pain and stiffness. but i’m loved. so it’s worth it. some days anyway lol.

    • @van_creative
      @van_creative 10 หลายเดือนก่อน

      I wish you well. Have you found some relief?

    • @sallykeller9292
      @sallykeller9292 3 หลายเดือนก่อน +2

      i can relate to your comment ! I'm 56 was diagnosed 5 years ago with AS after years of seeing Doctors for my Back pain they thought was from car accident and fall at store due to their negligence ! I have tried the Infusions sitting for hours through them did not help & several Speciality shots Humira, Cosenytx ECT.... It's been a LONG frustrating journey and having more bad days than good! Before got alot of relief from my mans HOT TUB!! but now can"t do that @ my wits end & tired of hurting ......before lookin forward to relief of the hot tub gave me some hope now i don't have that !! miss my walks ,shopping or even just a flippen shower .....hands and feet r going numb can't do my fingernails this last few months after praying to not take that from me . IF ANYONE has gone through all the different shots or Infusions chiropractors ECT........
      and has found something New that i havent tried WOULD appreciate feed back!!

    • @Mckenna12502
      @Mckenna12502 2 หลายเดือนก่อน

      Are you able to work? My R leg is gone😢

  • @doyogawithgail
    @doyogawithgail 2 ปีที่แล้ว +3

    So glad I found you Dr. Ortiz! This is informative and very helpful. Thank you!

  • @grammyb5216
    @grammyb5216 ปีที่แล้ว +1

    Yes it is all connected ❤ I am so so very thankful to have found you. It’s hard to find a great PCP here and I’m going to share this.
    I have RA AND AS and a few more to boot. Thank you so much for helping me so much. It will take a while for me to catch up 😅

  • @bbradford1825
    @bbradford1825 6 หลายเดือนก่อน

    This sounds exactly what I have! 20+ years and finally some understanding! 👍🏾

  • @haleydoe644
    @haleydoe644 ปีที่แล้ว +5

    I had psoriasis as a baby, and chronic idiopathic urticaria caused my cold air/water in childhood.
    I was diagnosed with costochondritis at 23, and over time the joint pain and transient paresthesias, worsening back pain with other, more worrying internal and neuro symptoms found me completely disabled by fatigue and pain.
    I started Enbrel today. Wish me luck!

  • @spencerhood402
    @spencerhood402 2 ปีที่แล้ว +1

    Thanks for the great video!

  • @ginabrown5093
    @ginabrown5093 2 ปีที่แล้ว +2

    I sure wish I was in your area...you seem like such a Wonderful Doctor, been suffering with no answers yet..

  • @AlexLevineFitness
    @AlexLevineFitness ปีที่แล้ว

    Nice video! I have been diagnosed with AS since 25. Started having symptoms in my early 20s sciatica, mid back tightness etc. Spondylitis wasn’t on anyone’s radar until a hip x-ray from a sports injury showed bilateral sacrolitis! My back pain didn’t start until years later though

  • @karikruska
    @karikruska ปีที่แล้ว +4

    I would love for you to do a video talking about Enthesitis/Tendinopathy related to Spondyloarthritis.

  • @sharonnarcisse-dhs-howardc8990
    @sharonnarcisse-dhs-howardc8990 ปีที่แล้ว

    Thank you very informative

  • @kelleywyskiel8513
    @kelleywyskiel8513 ปีที่แล้ว +5

    More than a decade ago I went to a specialist for something. Maybe a lupus test at the time? But he did tell me I have AS and that there was nothing I could do about it so enjoy moving while I can until it becomes unbearable.
    I blew him off because I thought it was a pretty whack way to not diagnose but diagnose someone.
    But I watched this out of curiosity and you’ve pretty much described my life and my pain 100%.
    After cancer, and hashimoto’s, I tend to feel like I’m over complaining and that they think I’m a hypochondriac so I don’t go a dr for anything other than my thyroid meds.
    I just take night quill when I can’t stand it anymore and try to sleep through the pain, the. I take lots of pesto that never works, then laxatives, then just push through the stomach issues, headaches, pain pain pain….just keep moving,
    I do a lot of your ga, a run even though it’s incredible painful on my feet hips and knees, and I cycle on a stationary bike when it hurts too much to run.
    If I stop moving I may not be stuck like that so I’m doing whatever it takes.

  • @olanrewajuabolore1223
    @olanrewajuabolore1223 9 หลายเดือนก่อน

    Happy happy to watch this video, am AS patient over 20years plus am surviving AS please help me out.
    Thanks for understanding

  • @Tom-In-Ga
    @Tom-In-Ga 2 ปีที่แล้ว +19

    Just came across your channel. Been going through the internet scaring myself half to death about AS. I was diagnosed about 2 weeks ago. I'm 69 and have always had aches and pains but, one morning, woke up with a pain best described as an electric shock in my lower left back. Only came if I moved a certain way or did some odd action. Dealt with it for a week and finally went to the doctor. They took an x-ray that came back with classic signs of AS. Blood test also confirmed it. Now I know I said a I was scared but not for myself. My son is 46 and I'm about to let him know that maybe he should get tested so, if he's positive for AS, he can start to treat it ASAP. Your video was one of the more reasonable things to watch concerned AS and I thank you.

    • @premiumturkish
      @premiumturkish 2 ปีที่แล้ว +2

      Hello Sir,
      Had you been feeling the symptoms for all those years?

    • @karshay1240
      @karshay1240 ปีที่แล้ว

      You explained well mine also have same condition it's literally like an Electric shock at the lower back

    • @vincentbrugetti7254
      @vincentbrugetti7254 7 หลายเดือนก่อน

      I think the only kind of test is assessment of symptoms and range loss and location of.

    • @donaldrasmussen5
      @donaldrasmussen5 3 หลายเดือนก่อน

      As usually comes from the mother's side

  • @juney18
    @juney18 ปีที่แล้ว

    I’ve been working w doctors for years! Finally after major spine surgery, I think I’ve found a rheumatologist linking my awful arthritis, IBS for yrs, chronic eye problems not healed by 3 eye doctors, now attacking my feet and knees instead of hands. It’s scared, but Praying my labs help her put it together.

  • @lourdesrodriguesvas4008
    @lourdesrodriguesvas4008 ปีที่แล้ว

    Thank you so much for your wonderful explanation. Please help me control it!

  • @kimberlyredfield2802
    @kimberlyredfield2802 ปีที่แล้ว +1

    I walked in the er with back pain 6 years ago. Now 6 years later my thoracic is fused misdiagnosed pacemaker paralysis. I wish they would have helped years ago. God bless you all on here

  • @michaelmargraf844
    @michaelmargraf844 2 ปีที่แล้ว +1

    Thank you Doctor

  • @jayntsngh
    @jayntsngh 2 ปีที่แล้ว +1

    you are so right. you understand AS such deeply. you must have AS.

  • @Darealdopegirl
    @Darealdopegirl ปีที่แล้ว +21

    I got diagnosed around the age of 35 years but was having back pains from the age of 19 years old. It has its moments i can say. Arthritis, bowel discomfort, bloating. I never let it got me down , I work out alot but when I do too much then the stiff joints leave me in pain for 3 days. Constantly in pain but bearable, each morning I woke up with pain to the lower back. Yet I can function, exercise free up my joints I realised. Dont gain weight with SA it makes it worst on your knees, back, feet bowels , you name it. Am beginning to wonder how my life will be as an elderly person.

    • @thanks3579
      @thanks3579 ปีที่แล้ว +1

      i have the same doubt
      i was wondering if there was a support group
      for people like you and me

    • @LesleyDemattierealandfriend
      @LesleyDemattierealandfriend 8 หลายเดือนก่อน +1

      Same

  • @muffsmerino
    @muffsmerino 11 หลายเดือนก่อน

    thank you, thank you great video will be helpful

  • @beatricefrask5230
    @beatricefrask5230 2 ปีที่แล้ว +1

    Thank you!

  • @greyfi
    @greyfi ปีที่แล้ว +2

    Outstanding info Ma'am. I'm a 60 year old retired Marine who, after a 20 year career, was diagnosed in 2004 with arthritis in my lumbar spine and right knee. I'm now having significant pain and discomfort in my hips, knees, neck and shoulders. Is it possible for some form of arthritis to spread throughout the body?
    Thanks in advance.,
    Ken

  • @pereboom23
    @pereboom23 8 หลายเดือนก่อน

    Thank you 46 I have bechterew diagnosed at 35 ❤️

  • @terramareverburg
    @terramareverburg ปีที่แล้ว +7

    Interesting...I was dismissed as a hypochondriac as well. I´m not making up my physical problems. Recently I noticed avoiding bread and beer from my diet thus going glutenfree helped me a great deal in controlling this awful condition or auto-immuun disease. No medicine could help and even worsens the jointpain. Now with this accurate diagnosis of AS, I'm finally served so thanks a million!
    Michiel H V

    • @nefertarikim
      @nefertarikim 7 หลายเดือนก่อน

      I agree. I am suspicious about AS on me, after 6 years of pain and nothibg has been diagnosed. I have a general sensitivity of gluten i observe and when i eat too much, my aches got worse.

  • @verlindaallen6299
    @verlindaallen6299 ปีที่แล้ว

    Dr. Could you possibly answer any of these valuable questions?
    Many people have asked questions about this diagnosis and beyond. Thank you so much in advance.

  • @scratchmediaohio
    @scratchmediaohio 5 หลายเดือนก่อน

    I think me being diagnosed with Uveitis first got me my diagnosis of AS. I'm still in very early stages so I believe I'm one of the lucky ones.

  • @christinedumont5155
    @christinedumont5155 ปีที่แล้ว +27

    I was diagnosed around 19/20 with A.S. A year or two later I was than diagnosed with fibromyalgia and Raynaud’s. Mental health without a doubt plays into and also goes hand in hand with rheumatoid issues. These chronic issues are exhausting

    • @morgannewilliams6098
      @morgannewilliams6098 ปีที่แล้ว

      Ive not been diagnosed..also have raynaud's and neuropathy in my hands. I hurt daily🤦🏼‍♀️ sleep makes it worse

    • @Rodnyet
      @Rodnyet ปีที่แล้ว

      You are so right, it is very exhausting and literally takes over your life.

    • @sandrabeauchemin1968
      @sandrabeauchemin1968 11 หลายเดือนก่อน

      ​@@Rodnyet xxccxccccccccccxcccccxcc?

    • @charliemorgan7665
      @charliemorgan7665 9 หลายเดือนก่อน

      Bless you hun I’ve been diagnosed with AS been struggling for years and got no answers. Then the doctor sent me a letter telling me I have it, I had no idea what I was being told! I’m now on amjevita injections but not noticed a change yet xx

    • @janetphillips2875
      @janetphillips2875 9 หลายเดือนก่อน +1

      ​. HI, When you wake up, does it feel like you slept under a pile of bowling balls?? Or, sometimes you wake up wondering how much longer you have to live, because there's no way you can keep going like this,? OR, you hurt so bad, if someone touched you, you'd break into a million pieces?

  • @mumsiedarkdragon2296
    @mumsiedarkdragon2296 2 ปีที่แล้ว +8

    I'm stiff as in the morning, I do stretching in bed. I feel better once my painkillers kick in. I can't sit down all the time but the thought of the gym is a nightmare 😂 I get through my day by gardening and chasing a toddler. The part of the disease I hate the most is not knowing what I'm going to be like day to day. Even more than the pain. My rheumy is lovely but idk if she's listening to me. You seem like a gem ❤️

    • @Darealdopegirl
      @Darealdopegirl ปีที่แล้ว +1

      Exercise helps it , walking and stretching but don't ever get inactive. Live your life and enjoy life ,dont let AS live your live for you. Work through your discomforts, when its too much take pain medication. No one understands or know what AS puts your body through.

  • @TroyForbesvideo
    @TroyForbesvideo 2 ปีที่แล้ว +4

    Enjoyed your vid. I’m HLA-B27+ with lower back, hip issues from 19 yo. Bad at times but never debilitating. Water, Motrin, ibuprofen, usually takes care of major flareups. Ive had one flareup of uveitis. So far, no other associated problems. I am thankfully lower on the spectrum of issues. I would suggest a first step towards a diagnosis would be to get the HLA-B27 blood test. There is a higher occurrence in men with Scandinavian heritage, for some reason.

    • @kimberlypuravida5690
      @kimberlypuravida5690 หลายเดือนก่อน

      Interesting I have been looking at this to see if there is a correlation my family is Swedes Danes and Norwegians.

  • @michaelkramer9997
    @michaelkramer9997 8 หลายเดือนก่อน

    Good information..I wish you also mentioned NRAXSPA..as I've been diagnosed with that condition. I do not have the hlab 27 gene.. SI joint pain everytime I walk. I also have knee and heel issues etc. I guess I fit into that grey area you speak of. Ive tried all the approved biologics with minimal response.
    I love to work out at the health club as long as it doesnt involve standing on my feet. Im sure there are others like me who dont fit in the specific diagnosid "hole"😅

  • @christopherrussell2844
    @christopherrussell2844 8 หลายเดือนก่อน +2

    Took 10 years for diagnosis. Now I'm just in pain every day. Pain mainly in hip but it used to be in chest. Have no trouble sleeping, although sleeping in is normal. Went to my family doctor for years, complaining of back and foot pain. Doc tried me seeing foot specialists for years. Saw a rheumatologist and he diagnosed me in 5 minutes. I do have the HLA-B27 gene.

    • @Mckenna12502
      @Mckenna12502 2 หลายเดือนก่อน

      Are you able to work? I put my body through the worst now its bin 6 months since my R buttock and R leg pain and lower back have bin unbearable...They took me out of my 19 year job and told me im disabled I'm starting to get some relief but that's from staying in bed witch i promised myself i wouldn't do i do have other other lumbar problems..

    • @christopherrussell2844
      @christopherrussell2844 2 หลายเดือนก่อน +1

      @@Mckenna12502 It's amazing how quickly you're disabled. Seems like as soon as I notified Human Resources, I was out the door.

    • @Mckenna12502
      @Mckenna12502 2 หลายเดือนก่อน

      @@christopherrussell2844 Seriously same🥺 the worst part is i gave that company 19 years of my life a exactly hard job and i know i made them so much money missed every single holiday birthday ect except Christmas day...I literally lost my mobility and job in 1 day and still can't believe it.They asked me to summit so much paper work when i couldn't drive i was dragging my right leg getting to my daughter's car was the goal only to find out the temporary disability pays 603$ a month and now my PC said full disability and I'm trying to except it but it's so hard..As i lay in bed to Relieve the pain i know that's my reality it's unreal...

  • @thefoxhole1474
    @thefoxhole1474 2 ปีที่แล้ว +8

    I have a AS I can almost pin point when mine started. I was in Junior high it was after my second round of hepatitis b vaccine I fell sick and shortly after that I started in with the back pain. It took over two years for anyone to properly diagnose me. I wish there was more understanding with women that has AS and pregnancy in particular. After having two children myself I wished I would have gotten better care. I wish I known what I know now back then I would have been able to prepare myself more.

    • @GRIMWOODz
      @GRIMWOODz 9 หลายเดือนก่อน +1

      My symptoms started with my eye not long after the hepatitis B shot I got for traveling then as time went on I started getting back,chest an hip pain etc. I've always wondered if the hepB shot had anything to do with it as to possibly unlocking/advancing what was already in the genes at much more rapid stage than what would normally come with old age and having it.

  • @user-xk9md4yf9j
    @user-xk9md4yf9j 7 หลายเดือนก่อน

    I've just been diagnosed with this. Starting with Methotrexate until January, and then Golimunab infusions, which will be permanent. I hope this all works.

  • @haydeetorres3602
    @haydeetorres3602 10 หลายเดือนก่อน

    I got diagnosed 2 yrs ago. I've had pain since a really young child due to HLA-B27. I've had leg and back pain since then including the SI joints.
    In 2012 had L4- L5 lumbar fusion surgery. This year has left sacroiliac fusion. Still recovering. Now have knee pain, high grade Achilles heel tearing. Very painful...my whole life is about pain😢 9:42

  • @irishchick5528
    @irishchick5528 2 ปีที่แล้ว +3

    Thank you, you have me thinking I’ve had terrible pains in my back since 2007 they would give me shot in my back for years until one day I noticed in my pain management office a little object I would call it . I asked him when he came in lol I didn’t give a chance to say anything, He said oh that is a stimulator for back pain I immediately said I want it. That’s how much pain I’m in. It’s hard for me to stand to do dishes, I get bad knee pain..

  • @deborahhovan6464
    @deborahhovan6464 2 ปีที่แล้ว +2

    You are so right that you must keep moving. I’m 71 years old now. I’m now concerned that my daughter who might have this!

  • @eladialopez3636
    @eladialopez3636 หลายเดือนก่อน

    It took about ten years before I was diagnosed with HLA-B27 w AS, Sjögrans and fibromyalgia. No one believed me. I felt like I was crazy for years. At least now I know.

  • @grammyb5216
    @grammyb5216 ปีที่แล้ว +4

    I am a woman who was diagnosed at 22 after 10 days in Baylor hospital with an amazing Rheumatologist, who financially said, I had a variant of AS. Since then, Fibromyalgia, of course IBS, Rheumatoid Arthritis, (yes the big bad one) and more, y’all. I have issues with my eyes, knees aren’t good, but the GI troubles are the most difficult to deal with.

    • @Sweety-ii2ww
      @Sweety-ii2ww 11 หลายเดือนก่อน

      How r u now?

    • @grammyb5216
      @grammyb5216 11 หลายเดือนก่อน +2

      @@Sweety-ii2ww very thankful that I can still move and enjoy my family. I have many days with challenges but I am extremely blessed.

  • @19vanglin63
    @19vanglin63 11 หลายเดือนก่อน +3

    I'm a 61-year-old woman. I was diagnosed with. AS in the 5th grade back in 1974. My family was told there was no treatment and there would be incapacitating flares. I was sent to physical therapy for two years to learn how to old keep limber and mobile. I was given stretches to to every day and especially during flares. It was drilled into me to always stand up straight no matter how bad it hurts so my spine doesn't the bent so I always have. How, I often have to use a cane in order to keep myself upright during particularly painful flares. Last year I had pneumonia for 3 1/2 months. I was in a flare that lasted nine months. I was having severe rib and sternal pain from the AS and eventually third degree heart block along with sick sinus syndrome during that period of time. I ended up with a pacemaker to keep my heart from stopping and me to keep it from going too fast. One doctor said AS could be playing a role but most of my team say AS doesn't affect the heart. I've always walked and stretched to ease the pain but now I can't tolerate exercise. I'm miserable. I've gone to a couple of rheumatologists over the years and they tried so the NSAIDS and it drugs. The last rheumatologist I saw the next step would be biologics but they were prohibitively expensive without insurance. So, I've just gone about my business of dealing with the horrible pain my whole life without complaining for the most part. I have an appointment in July with a new rheumatologist. I've been waiting months for the appointment. I have insurance now and I'm hoping for the best.

    • @GRIMWOODz
      @GRIMWOODz 9 หลายเดือนก่อน +1

      Sounds like you've been dealing with it pretty rough from the start I'm 38 and got diagnosed 10 years ago I'm on NSAIDS but they're just a band-aid really as I can feel it progress as the years go by I hope with your health insurance you get better help

    • @tomfish1285
      @tomfish1285 3 หลายเดือนก่อน +1

      I know this might sound silly but I've suffered from this for 40 years until I started a Carnivore diet and it's a absolute miracle. Wish you the best.

  • @gamaltaher9714
    @gamaltaher9714 2 ปีที่แล้ว +1

    Thanks

  • @lindaloevendie5461
    @lindaloevendie5461 ปีที่แล้ว

    Hello
    Linda from Durban South Africa
    Thank you
    Thank you
    In my late 50s I was diagnosed with Uveitius (out of the blue)
    Luckily the Opthlmologist I went
    To see Sent me for a number of tests
    The Markers for RA were very high
    But I had no symptoms
    I was treated by the Opthlmologist
    And after a number of flare ups
    It has settled down
    I was then sent to a RA Specialist
    And was diagnosed with AS
    As well as RA and Uveitius
    She prescribed so much medication
    That eventually after about 3 years I couldn't afford them
    So was weaned off the
    So far I've been ok
    Just AS Left Hip
    But since then
    Last year I had a Lumpectomy
    Left breast and 6 weeks of
    Radiation
    I'm now on a Hormone blocker
    Monthly Injection
    Side effects are not great
    But managing
    So far Uveitius has not flared up
    Again
    Now 68 yrs old
    Just feeling a bit tired
    I no longer see the Rheumatologist
    All the meds were getting too
    Much to deal with
    Thank you
    So interesting and informative
    Regards
    Linda

  • @mrsjohnson1743
    @mrsjohnson1743 8 หลายเดือนก่อน +1

    Wouldn’t surprise me if up to 50% of doctors dismiss or diminish women's pain. Even more so, women of color.
    It's a good idea to bring someone in to the appointment with you. It can make quite a difference in how they listen and what they do to help you. Like night and day when you have a “witness”.

  • @Darealdopegirl
    @Darealdopegirl ปีที่แล้ว

    Most of the symptoms here i have encountered, my eyes are good, right heart block, tendon pain, I still enjoy life but every single day I have back pain, pain in my lower body. Sometimes I may take medication when it can't handle the pain or when I want the pain to leave me alone.

  • @NJSMKMMS
    @NJSMKMMS 2 ปีที่แล้ว +7

    Hi Dr, I'm a female Australian, I have AS but cannot go on any of the biologics because I keep getting way too many random but serious infections. So I am on the highest allowable dose of Salfasalazine and only recently after a massive flair after my second Phizer shot. I started a Methotrexate dose once a week. I happen to know a few people with Lupus and they were having the same reactions that I was having on biologics and she was prescribed IVIG infusions which stopped the infections. So my question is, is anyone using the IVIG for anything like the inflammatory Arthritis's please? A YES/ No answer will suffice if you can say nothing else. Thanks so much.

  • @carlarentas2210
    @carlarentas2210 ปีที่แล้ว +1

    I was diagnosed with fibromyalgia 2006 and I have had 2 knee replacement, 3 knee revisions, lumber fusion, stimulator I’ve tried everything to deal with the pain and the arthritis. I was told in 2015 surgery for my back surgery that my back was unstable and needed
    to have my SI and 5l fused to help. Also facet joints were also arthritic. I have very bad stiffness in morning, I take pain meds in order to be able to move which takes about a hour for me to loosen up. My pain is lower back, thoracic, neck , shoulders, thighs, every finger which I was diagnosed with arthritis in each finger 4 months ago and now my right knee is painful again. I read that your bones start to fuse with AS. My question is, can AS still be seen on MRI/X-ray if I had a lumber fusion done in my lower back?.
    Back in 2019 my rheumatologist ordered a ANA test and I was negative for the diseases that ANA tests for but my ANA itself showed positive. I was told there are some people show positive ANA due to their genes. I was giving some inflammatory meds and no answer to my pain issues and positive ANA. Sleeping is non because twisting and turning is very painful. I had a MRI 2021 that shows I now have increased kyphosis in thoracic, with degenerative disc narrowing involving multiple thoracic disc levels. Mild S scoliosis , chronic endplate deformities in the thoracic and with anterior osteophyte formation and mild posterior bony productive change at the same levels. This MRI was compared to
    a 2016 MRI was compared. Now the words may mean nothing serious since I’m not a doctor but it sounds possible enough that changes are occurring with no answer to why. I’m thinking is it possible I was misdiagnosed with fibromyalgia with their similarities? And am I still being misdiagnosed?. I plan to ask my doc for the genetic test for AS to be done. If it’s positive then maybe I solved the 17 yrs of pain that just keeps getting worse and solve my son and mother’s pain as well. All 3 of us are going through the same with no answers besides meds and physical therapy which I have done. I have been suffering since a young age, I’m now 55 and want to find out really what’s going on and start the rest of my life feeling better. I am a woman of color and I do feel the care or advice is not always given correctly by some doctors so that is a concern and true. Ex: went to see a new orthopedic on 8/25/22 he was very pleasant but didn’t address my full issue. I told him everything I wrote to you and I asked if I should stand to show exactly where my pains are and he insisted I can just stay in the sit he can examine me there. He’s the doctor so I did. No bending, no twisting tests, nothing to show where my pain is at which is all over. He took X-ray said my lumber fusion healed great gave me an injection, meds and a script for physical therapy. Can AS even be seen through the metal plate and screws I have on my SI-l5? I even had the stimulator removed due to unable to go to regular MRI machines and it wasn’t helping me. He did diagnose me with bursitis on my right hip but both hurt, the right is just worse.
    Any advice or help is truly appreciated. Life with no answers is just as painful as the disease.

  • @rochelleprefontaine5511
    @rochelleprefontaine5511 2 ปีที่แล้ว +1

    So glad i found your video. I am a 63 year old woman that has AS. The problem is the rest of my health issues are not considered. Treatments such as costentex after a year i was diagnosed with kidney cancer. But when offering treatment for AS the specialist does not consider my COPD diabetes uveitis psoriatic arthritis fractured chest bone and torn muscle. All aspects of my health need to be considered when prescribing a biological. I feel pressure to start enbrel.

    • @ConnectedRheumatology
      @ConnectedRheumatology  2 ปีที่แล้ว +3

      You are absolutely right, it all has to be considered. I would also add, that along with those considerations (which I believe most doctors do, actually) is that those considerations need to be communicated to us. This is where I have a big bone to pick with our current medical system where we are only given 10-15 minutes to discuss all these issues with the doc. I wonder if the pressure you feel re: Enbrel could be calmed with more one-on-one time with the doc to discuss the issues at hand and why they feel Enbrel is the right choice for you. It may be worth considering making an appointment, specially just to talk about this and get your questions answered. Maybe you end up using Enbrel, maybe not - but at least y'all can get on the same page. Hang in there!

    • @dc.pentrumesteri4893
      @dc.pentrumesteri4893 2 ปีที่แล้ว +1

      @@ConnectedRheumatology 15 minute este mult an Romania medicul scăpa de noi la consult an maxim 5 minute

    • @sharonvaldez9059
      @sharonvaldez9059 2 ปีที่แล้ว +1

      @@ConnectedRheumatology I was given a 2 week supply of Embril samples 2 years ago when diagnosed with RA (diagnosed at 12 with rheumatism by Rheum.) Ins would not cover. Dr changed me to Humira and methotrexate. Said I couldn’t use Embril again and it would t work. Would the 2 injections I had be enough to make it not work? He also told me last week that my seronegative RA is uncontrolled and I’m worse than when I first saw him 2 years ago. My mom had RA and I think AS. It sure makes sense with what I’ve suffered with. Tailbone pain, can’t sit long, muscle spasms in mid back, neck, tmj in jaw horribly and locks up, foot heel and ball of foot pain, neck pain, migraines, dry eyes (also have sero negative Sjogrens).

  • @shannonhoward2947
    @shannonhoward2947 ปีที่แล้ว

    100% woman here I was diagnosed finally 6 years ago with as

  • @Chunkable999
    @Chunkable999 2 ปีที่แล้ว +13

    I have been suffering, from what I suspect to be ankylosing spondylitis since my early teens where it started in my knees and hips. Now it is all my large joints, jaw, and entire spine. I can see the ankylosis and erosion and bridging of my SI joint in my x-rays which I do not believe were properly interpreted. I have been working on trying to get a referral to a rheumatologist. I keep facing the same barriers to care such as gas lighting and the massive egos of doctors.

    • @Chunkable999
      @Chunkable999 2 ปีที่แล้ว +1

      @@alijibrin2883 There is no cure for AS.

    • @ConnectedRheumatology
      @ConnectedRheumatology  2 ปีที่แล้ว +2

      Oh my! I'm sorry to hear this. Definitely keep pushing to see a rheumatologist and hang in there!

    • @NathanChisholm041
      @NathanChisholm041 2 ปีที่แล้ว +2

      Arnt, you covered? In Australia, all medical care is free except the dentist! I have Axial Spondyloarthritis and I was referred to a Rheumatologist at the Royal Perth Hospital for free! And I got a free MRI yesterday but spent 1.5hrs in the machine doing a full spine scan. I hope it works out for you mate...

    • @SatumainenOlento
      @SatumainenOlento 2 ปีที่แล้ว +2

      @@NathanChisholm041 Well, the comment is saying that she is "trying to push to get a referral to rheumatologist". Often the problem is to get medical "professional" to believe that your symptoms are real and considerable problem. Before that you get no- help in any shape or form. Frustrating.

    • @keelybaby17
      @keelybaby17 2 ปีที่แล้ว +2

      Me too! So frustrating I’m tired of looking like a hypochondriac lol! I’ve felt bad since childhood started in my knees and I’m tired and In pain all day everyday! I keep going but I research what my doctors aren’t. It’s been more then 6 months that I started seeing rheumatologists, neurologists etc and still no answers!

  • @johnprice914
    @johnprice914 2 ปีที่แล้ว +8

    This was the most helpful video. Do you provide Independent medical opinions? I have been fighting the Veterans Administration for years, I just got a diagnosis of AS at 50 and thought it was Persian Gulf Syndrome?

    • @ConnectedRheumatology
      @ConnectedRheumatology  2 ปีที่แล้ว

      I responded to your email, if you didn't see it, possibly check your spam folder.

  • @TheHomebodyGirl
    @TheHomebodyGirl 2 ปีที่แล้ว +13

    I was recently diagnosed with AS last year after being sick for many years and was told I was too young to have arthritis by a couple of doctors. So I was just brushed off, probably because of my skin color. I was just given 800 mg of ibuprofen to take for back pain for years and then Celebrex . My health continued to decline. All the signs were there. I kept searching for a doctor to refer me to a RA doctor and finally one who did. That’s what lead to my diagnosis. Im mad because it took years before I was taken seriously about my back and hip pain. The other thing I experience with AS is extreme fatigue

    • @bijoyantabhowmik8152
      @bijoyantabhowmik8152 2 ปีที่แล้ว +2

      How are you now?

    • @tamoyawalters3562
      @tamoyawalters3562 ปีที่แล้ว

      I'm going through the exact thing now. I'm 23 and been suffering from I was 14. I'm still yet to get an official diagnosis of AS. So far the Rheumatologist I'm seeing is saying Undifferentiated inflammatory arthritis, due to the fact that the blood test are negative and no changes seen on the MRI.

    • @ryangulley2051
      @ryangulley2051 11 หลายเดือนก่อน

      Yep I'm always tired.24 7.

  • @christine9467
    @christine9467 2 ปีที่แล้ว +4

    An online quiz led me here today and I’m hoping this isn’t my problem. For three years I’ve been having severe pain n tightness in left lower back and left hip when I sleep or sit too long. When I move around in the morning, it feels better. Nights are hell and I usually wake up between 3-4 am. 😢 Going to the dr. in 2 weeks.

    • @ConnectedRheumatology
      @ConnectedRheumatology  2 ปีที่แล้ว +2

      I know the wait for the appointment and to get answers can be excruciating. I recommend jotting down your symptoms, what makes them better/worse and investigating your family history before your appointment. Good luck!

  • @FOXYPEACH2
    @FOXYPEACH2 ปีที่แล้ว

    Took over 30 years. Besides, affecting my back, hips, knees, my eyes, horrid exhaustion and Inflammatory Bowel Disease with fistula. Ugh. On iv infusions but only about 65% affective.

  • @jenniesouthworth5983
    @jenniesouthworth5983 2 ปีที่แล้ว +2

    First I was diagnosed with RA but had flare up periods with back pain, then it progressively got worse like daily worse pain ever 😖 That's when I asked my rheumatologist what up with this?!? Prior to that I was diagnosed with degenerative disc disease in my back it took 8 years to get a proper diagnosis of AS, thank God cuz the new treatment has been helping!!

    • @ChessingtonGroup
      @ChessingtonGroup ปีที่แล้ว +1

      Hi... would you share what kind of treatment you are (were) taking? Thanks

    • @jenniesouthworth5983
      @jenniesouthworth5983 ปีที่แล้ว

      @@ChessingtonGroup I'm on humira right now that's helping my spine the AS

    • @vicBellamonkey
      @vicBellamonkey ปีที่แล้ว

      Same here.. I'm on my 6th type of treatment..Lupus and Rheumatoid Arthritis degenerative tissue and joints..
      Hard stuff..

    • @jenniesouthworth5983
      @jenniesouthworth5983 ปีที่แล้ว

      @@vicBellamonkey hope somethings helps 💕🙏🏻

  • @HouseKatArmy
    @HouseKatArmy 11 หลายเดือนก่อน +1

    I started having symptoms at 17 years old, and did not get a proper diagnosis til I was 47 years old, then I had a year of treatment with humira, lost my insurance, and it took another 5 years before I was able to get another rhuematologist to get me back onto humira. My spine is destroyed, I have stenosis at every level, my neck is the worst. I have permament nerve and spinal cord damage from the stenosis and need to use a wheelchair to get around if I need to be on my feet more than a few minutes. I have sclerotic lesions in my thoracic vertebrae (this was the first place I had symptoms at 17) and any standing, or movement of my arms to do chores like dishes causes the center of my back to BURN and my arms go weak, painful, tingly fingers....I was told for years that there was nothing wrong with me. I am one of those who have developed almost all of the features along the spectrum, and I have to think that if I had good medical care when I was younger, that maybe I would not be such a mess now.

  • @allysonyoung2771
    @allysonyoung2771 ปีที่แล้ว +2

    I am a 66 year old woman. My first attack of uveitus was when I was 40. But it is just recently that I am suffering lower back pains at night when in bed and a terrible growing stiffness there. Now I am putting it all together. I have had, what a GP said, was IBS for decades and a non ending skin rash from my early 20s. ( Skin specialists said they didnt know what it was). I have never seen a rheumotologist and it is obvious I need to. It is just my research on internet that leads me to this conclusion. It is not thanks to any doctors I have seen.

    • @nefertarikim
      @nefertarikim 7 หลายเดือนก่อน

      The same. Skin rash very frequently, gluten sensitivity and now these aches for 6 years and no diagnosis.

  • @SusanDayz3912
    @SusanDayz3912 7 หลายเดือนก่อน

    Does this lead to thigh pain? I was diagnosed with fibromyalgia but I know there is something else going on in my body. Lumbar spine MRI from 2019 indicates minor degenerative change from SI joints, mild osteophytes SI joints. Recent xray said SI joints unremarkable. But when I wake up I need a cane to walk, it takes hours to loosen up, pain is awful in lower back and thighs. Fingers swollen, now I have heel pain in my left leg. I asked awhile ago for a new MRI and the doc said no. :(

  • @ginabrown5093
    @ginabrown5093 2 ปีที่แล้ว +1

    I have both issues back injuries from herniated discs and the as along with the ibs, psoriasis which comes and goes it isnt severe seems to come on when stressed, and I have joint pain in large and small joints and my fingers and hands lock up, my pcp thinks could be a mixture of both

  • @brittanyerickson5212
    @brittanyerickson5212 ปีที่แล้ว +1

    Women are just diagnosed less often. I've had several doctors try to dismiss my AS as OA when its CLASSIC radiographic AS.

  • @loisoleary5217
    @loisoleary5217 ปีที่แล้ว +1

    I was diagnosed with Fibromyalgia almost 24yrs. ago, and I have had pain from low to ''maybe I will die soon." I have maintained a daily level that I live with, unless I have a flare. In Feb. I had covid and was in the hospital for 1 week. I am 72yrs., and am having symptoms of Polymyalgia Rheumatica. Could you talk about this?

  • @jenb975
    @jenb975 9 หลายเดือนก่อน +1

    I do not have the gene but definitely have as. I'm already fused in certain parts of my spine. 40 years old and have had issues since I was 17 and I'm sure before that as I use to have leg cramps as a child and was told it was growing pains. It's a horrible disease especially when you go undiagnosed for years.

  • @stylemethrift997
    @stylemethrift997 ปีที่แล้ว

    I've been dealing with flareups of hip pain, sciatica, lower back pain and digestive issues for 3 years. X Ray 3 years ago said no significant sign of arthritis, I had physio and got signed off after 2 sessions. Lockdown happened and it all persisted. Sometimes it takes me 10 minutes to get into bed, the pain is excruciating with ibuprofen doing nothing. There are flare ups where I can barely walk. I've been with two new physios and finally had an MRI which confirmed significant inflammation, then a blood test which confirmed HLA B27 positive. So they now think it's AS. I'm 30 years old now. Pilates has saved my joints, I'm lucky they are healthy so I'm hopeful medication will help when the flare ups are really bad. My worst lasted 6 weeks 😪 worth noting my pain doesn't follow a typical inflammation cycle. It can come on suddenly any time of day. Too much movement and not enough can equally trigger it.

  • @jm6628
    @jm6628 2 ปีที่แล้ว +5

    So glad to see this video! I am in the process of seeing a rheumatologist and currently pre-med hoping to be a rheumatologist in the future! 2 questions, does AS also have flares? Also, does Sjogrens ever accompany it? Thanks so much for taking my suggestion! You rock!

    • @ConnectedRheumatology
      @ConnectedRheumatology  2 ปีที่แล้ว +3

      Wonderful! We are in need of more good rheumatologists!
      Yes, AS can definitely have flares and Yes, Sjogren's can accompany almost every autoimmune condition, including AS. Good luck!

    • @jm6628
      @jm6628 2 ปีที่แล้ว +1

      @@alijibrin2883 I’m glad to hear you are doing well, but there’s no evidence supporting natural medicine “curing” autoimmune disorders, and you should be very careful to make sure you do not have recurring damage - always follow up with a Rheumatologist

  • @gerardosanchez6892
    @gerardosanchez6892 ปีที่แล้ว +2

    I do have AS I have a question.....What type of bed should I buy to relieve pressure on my hip? many thanks

  • @ricoviselli
    @ricoviselli 2 ปีที่แล้ว +3

    I have not been diagnosed by a doctor but it appears that I have many of the symptoms. I agree that there is a mind body connection to healing however I need a little more help than thinking the pain away, (I really tried) so, I have been lying on a 36 inch hard foam core that is aligned with my spine from the occiput to the sacrum. Spoiler alert IT HURTS at first but after a few to 15 seconds, it feels like a yoga pose as I find it helpful to focus on my breathing. my spine is absolutely straight. the foam core is pressing my sacrum thereby stretching my SI joint while my ribs are stretching the connecting points at the sternum and the spinal connections at each individual rib (did i mention that IT HURTS for a bit) as I relax and let the foam core do its work the pain is replaced by gentle but deep stretching. I move my arms to work on my neck and shoulders and my legs to work on my SI joint, low back, and core. This all takes a few to 15 minutes depending on the day. Each day is different.

    • @ConnectedRheumatology
      @ConnectedRheumatology  2 ปีที่แล้ว +1

      I'm glad you have found something that helps, even though it sounds like it can be intense! If you haven't already, it may be worth discussing with your doc if tests should be done to look into the possibility of AS.

    • @plutostar2295
      @plutostar2295 ปีที่แล้ว

      @@ConnectedRheumatology
      I have read how to diagnose AS but no one is telling me how to treat it. Tablets?, diet, exercise, physiotherapy? What? All I have used is NSAID which are not good for the stomach also.

  • @mandym34
    @mandym34 2 ปีที่แล้ว +2

    Hi I was diagnosed with AS last year mri scans showed full spine with shiny corners and sacroiliac joint abnormalities also have hip knee ankle and shoulder pain, trigeminal neuralgia occipital neuralgia plus left eye pain, took years and years to get diagnosed told it was all in my head since i was 18 I’m now 46 and in constant pain, I’ve been delaying starting amgivita as scared of the side effects, would you recommend this drug I’ve just turned 46 and there’s loads of days in the month I can’t move out my bed with the pain and most nights from 4am onwards my body and mind is sooo tired .

  • @wangdangdoodle1813
    @wangdangdoodle1813 2 ปีที่แล้ว

    Right around the 9:40/50 spot on video it occurred to me that I use a cane but it is most very helpful if I need to stand in a spot that aside going for physical therapy was more exhausting to me along with the therapy as well 🤔 I love being busy and hate sitting around so I take a bit of meds and move as much as possible as life goes by there is no time to let yourself vegetate along with your state of mind ,🤔 near or far as I can tell , when asked what is your level in a 1 through 10 metrics I'm often dumbfounded with too much to say so?

  • @udokamoses8190
    @udokamoses8190 8 หลายเดือนก่อน

    I just listened to your explanation and 90% my 12 Yr old son's symptoms falls within but the only thing that does not match is that he does not feel better with activities, in fact walking about is a big problem, he can't stand straight for more than 10mins without complaining of the back pain, he feels a little better when lying down, the knees and ankles are consistently painful even to touch and entire back is very tender. No pain killer has ever worked. He is currently on methotrexate 20mg per week but even that has not helped. He has completely lost mobility 3 times within the last 18months since this started. Sometimes physiotherapy seems to make it worse. It's so confusing but the rheumatologist diagnosed it as AS???

  • @LordWalsallian
    @LordWalsallian 2 หลายเดือนก่อน

    I’ve had inflammation in my left sacroilliac joint since September 2023. I went to the GP in October and was referred for Physio. Physio was making everything worse and causing neuropathic burning pain in both feet. By late January/February 2024 i could barely walk. I went to the GP again and she noticed that my spine was not as flexible as it should be, particularly lower back and the sacroilliac joint. So she ordered an XRay and did the HLA-B27 blood test (was not aware of the blood test, just thought i was going for another ordinary blood test as my inflammatory markers were mildly raised and nobody could tell me why). The test came back positive, and the XRay of my Sacroilliac joint shows Osteoarthritis and some fusion of the joint. GP has suspected AS for a while now, she’s pretty certain i have it and am waiting to see a Rheumatologist. I recently qualified as a District Nurse in the UK…after being in Nursing (as a Nursing Assistant) for 16 years. I don’t want my career to end before it’s properly started. I also have Ehlers Danlos Syndrome which was diagnosed in 2014. 😢

  • @barbararadzeviciusbondi4150
    @barbararadzeviciusbondi4150 ปีที่แล้ว +1

    I got my diagnosis of genetic AS after 2 of my brothers had been diagnosed and I had the same symptoms. At 19 I thought I had MS. It wasn't until my GP said she has AS and explained this condition happens to women to my 'expert' rhymatologist who denied I had AS.

    • @angryanglervsacrobat577
      @angryanglervsacrobat577 7 หลายเดือนก่อน

      Why did you think you had Ms at first? Were there Ms symptoms? If so, what were the symptoms

  • @perlaramirez7094
    @perlaramirez7094 2 ปีที่แล้ว +12

    Hi doctor, reaching out from Texas. Do you have any patients that present with mid-upper back pain? I've been having flare ups that cause a deep rheumatic pain in my spine for 1-2 weeks along with fatigue and achy joints. I've had a creaky breastbone for years also. I've also been having a lot of left knee & Achilles pain (including lateral knee swelling. Also, stiffness especially after sitting). Thank you!

    • @JG4President
      @JG4President ปีที่แล้ว

      Yeah that’s it.. that’s what I got

    • @mizzmention8555
      @mizzmention8555 ปีที่แล้ว

      I have had mid upper back pain for months now with tingling under left shoulder blade. All my rib cage hurts inc breast bone, did you get answers?

  • @lindap.p.1337
    @lindap.p.1337 ปีที่แล้ว

    My husband was dx with AS at age 19. I would say his symptoms have usually been mild. He is now 76 and last year he was diagnosed with multiple myeloma, kidney failure and a heart attack with his first dialysis. It would not seem AS could be related. What would you think? Currently he takes a million meds but nothing for AS. For the past 15 years or so he has taken only Tylenol for back pain.

  • @susanerick6698
    @susanerick6698 ปีที่แล้ว

    Can you post a video on DISH disease ?? My brother has it.

  • @haleydoe2279
    @haleydoe2279 ปีที่แล้ว +1

    My primary care doctor congratulated me for being the first woman he's ever met with AS. I need a new doctor, haha.

  • @ericapoe
    @ericapoe 2 ปีที่แล้ว +2

    Can you develop AS along with Psoriatic Arthritis

  • @lindad1195
    @lindad1195 2 ปีที่แล้ว +1

    I have severe pain in my low back, SI joints, hips, knees, and shoulders! I’ve been to see my primary care as well as a sports med dr who has been giving me steroid injections in my joints. Is this okay for treatment?

  • @barbararadzeviciusbondi4150
    @barbararadzeviciusbondi4150 ปีที่แล้ว +3

    I believe the trigger event that set the HLAB 27 marker into action was a Smallpox immunisation I received at age 18.

  • @deborahhovan6464
    @deborahhovan6464 2 ปีที่แล้ว +3

    It took me 32 years to be diagnosed with this . By then was a little too late. By now I am extremely sad that I wasn’t able to get any treatment and was called crazy and a hypochondriac. Wish I was able to see you back then

    • @melaniemccallister2372
      @melaniemccallister2372 2 ปีที่แล้ว +1

      What was it that finally got u this dx ? I have been dealing with symptoms off an on since mid 20s ( I am 47 currently) so most of my life lived normal suddenly have goiters and 20 something years ago they gave me total thyroidectomy. Telling just like my gallbladder and appendix being removed bc of stones in each of them years in between and basically normal or just slightly high results for inflammation or Ra factor always negative. I should just realize and except body getting older causes issues. But how many 47 year old women have had in last 6 years adult sudden onset of lazy eye so bad I had to have surgery on.both eyes because muscle were weak and could hold their self straight. Then arm and neck weakness and muscles weakness that caused severe atrophy of arm I will never get my full function back to find I had cervical spondolothesis and several bone lessions of t spine and lumbar needed worked but had to wait almost year in-between the cervical spine first because I would be paralyzed then t spine reconstruction and recently lumbar surgery. Where can I find a Dr to take me for real with basically normal blood work. Can't see Dr for Ra or even as . How do I get to talk with someone with real autoimmune experience

    • @deborahhovan6464
      @deborahhovan6464 2 ปีที่แล้ว

      @@melaniemccallister2372 I would start by contacting this amazing Dr. On this video. That’s first. Then ask this Dr. For any help and referrals to possible doctors in or around your area. Go on line for some teaching hospitals, they are more likely to have Doctors who practice the study of immunology. I’m an old nurse and treatments when I first displayed symptoms. as I said it was way to late for me but I’m praying it won’t be for you! Possibly start with your family doctor for referrals to a doctor of immunology. I too went to a couple of RA doctors and I wasn’t helped and unfortunately I almost died for the lack of knowledge back then! I started by going back to my medical training and I told my doctor that I wanted to start with my hair roots (so to speak) but I meant my head, then go through each section of my body to either eliminate any disease then or to diagnose any disease there. The only thing that I do now is to keep moving. I can’t take pain medicine for the terrible side effects. But I do take Tylenol arthritis strength during the day and night. It’s not always easy but I’m determined to function as best as I can. I some of this can help you my friend! ❤️❤️

    • @donnamiller7501
      @donnamiller7501 ปีที่แล้ว

      @@melaniemccallister2372 I had been going to Dr to Dr! I have been diagnosed with this condition also! I finally went to a homopathic Dr who told me I had parasites! I have done a lot of researching to see what this lil creatures will cause and lesions is one of them! Their blood tumors that feed them! That’s just what I found out about me! I just know I was going to Drive ti Dr with no answer and not being healed so I finally went ti homopathic Dr who found the parasite!

    • @elainewaterman773
      @elainewaterman773 ปีที่แล้ว

      @@melaniemccallister2372 j

  • @angeladesilva7913
    @angeladesilva7913 2 หลายเดือนก่อน

    My spine surgeon just told me I have AS and referred me to rheumatology. I’ve had GERD bleeding duodenal ulcers, heart arrhythmias which are new and now he was looking at an MRI from 2021 and a current one show’s spontaneous fusion of nearly my entire thoracic and lumbar spine. Since he diagnosed me with degenerative disc disease and did disc replacement in my cervical spine but didn’t diagnose the AS until today! I’ve had low back pain for at least 8 years. Is that a malpractice lawsuit?

  • @Welcome2TexasPodcast
    @Welcome2TexasPodcast 2 หลายเดือนก่อน

    It took 20 years do be diagnosed. HLA-B27 positive. Simple blood work

  • @letletdelrosario5465
    @letletdelrosario5465 ปีที่แล้ว

    Hello dra i have a neckpain for more than 1 yr is ok to take celecoxib 200 mgs.

  • @hemachhantyal5452
    @hemachhantyal5452 2 ปีที่แล้ว +4

    I wish i knew about AS 4 yrs before…suffered so much, missed so many opportunities, disease took so much from my life, went through depression,anxiety ..almost gave up on life..finally diagnosed..I get so emotional climbing all stairs, getting out of bed, walk without limping as much as before with bit lesser pain than before…so grateful for every individual who put their hard work to invent some medicine that doesn’t cure but let people live a normal life…😭😭hope everyone gets diagnosed early and find light in their hope….

    • @sabrinasarah7239
      @sabrinasarah7239 ปีที่แล้ว

      Glad to hear you feel better. What medications are you taking?

    • @sallykeller9292
      @sallykeller9292 3 หลายเดือนก่อน

      @hemachhantya15452 What medicine are you on for your AS? glad to hear u feel better!

    • @hemachhantyal5452
      @hemachhantyal5452 3 หลายเดือนก่อน

      @@sabrinasarah7239 I am on Humira ☺️

    • @hemachhantyal5452
      @hemachhantyal5452 3 หลายเดือนก่อน

      @@sallykeller9292 Hi Sally I am on Humira

  • @Rodnyet
    @Rodnyet ปีที่แล้ว

    I was told probably 5 years or so ago that I didn't have AS because I could touch my toes but I seem to have all of the symptoms described in this video. Could I have been misdiagnosed?

  • @sharonvaldez9059
    @sharonvaldez9059 2 ปีที่แล้ว +7

    Could H pylori in the gut be a factor in AS? I’m skinny everywhere except my bloated belly. Been this way since I was 4 or 5. Could a regular gp do labs for the AS and h pylori?

    • @donnamiller7501
      @donnamiller7501 ปีที่แล้ว +1

      I’ve had bloating from blockages! In the pelvic and Colon! I’ve been to Dr to Dr and not one of them could find out what was causing it! Finally went to homeopathic Dr and I had parasites! They were causing blood tumors in my body that feeds them! I’m now using a parasite cleanse to get rid of these lil creatures!

    • @donnamiller7501
      @donnamiller7501 ปีที่แล้ว

      H- pylori is a parasite! Antibiotics will not get rid of it! Go to your nearest Herb store or look on line for herb to kill it!

  • @xristoforoseuaggelou1322
    @xristoforoseuaggelou1322 ปีที่แล้ว

    Does AS harder muscles and makes you problems with the nerves of your back?

  • @vijaykothekar5406
    @vijaykothekar5406 3 หลายเดือนก่อน

    Hello All - What is the treatment for AS? Also, is there any definite set of exercise which I can do to live better. Have been diagnosed with AS 2 yrs ago.

  • @jayntsngh
    @jayntsngh 2 ปีที่แล้ว +2

    i(26yo) have AS from last 11 year. currently i am having pain in rib cage, last lowest rib cage from last 3 months . i couldn't sleep 3 continuous day from pain. spine & hip joint pain is persistent. &back rib cage, front rib cage side rib cage. ankle joint pain, neck pain these varies time to time

    • @ConnectedRheumatology
      @ConnectedRheumatology  2 ปีที่แล้ว +1

      Sorry to hear about your bad bout of pain. Flares are certainly discouraging. Hang in there!

  • @lr9152
    @lr9152 4 หลายเดือนก่อน

    I was diagnosed with DISH....then they said AS. I had a L5 S1 fusion 11 years ago. I've had irritable bowel my whole life. Had a colon resection last April because of diverticulitis. Was recently diagnosed with macular schesis. I have pain in 1 eye but they don't know why. Slight narrow angle. I literally don't know where to turn. I'm supposed to start pain management this week but not sure what they are planning. I'm in agony for the first hour or two in the morning and it's very painful by days end but I don't have too much pain during the night. I've been using a heating pad while sitting, tylenol arthritis and THC creme during the day which helps along with moving. Any advice?

  • @josephcarino5829
    @josephcarino5829 2 ปีที่แล้ว +2

    I was diagnosed with this at the va because i could not put any weight on my knee
    They said we think. What does that mean
    Never treated, it 8 years later my neck is crooked. My bodys stiff and my back is killing me. Now they want to put me on humira, but i just had a kidney transplant and im not crazy about that. This should have been treated years ago. Good ole va

    • @illersasquatch
      @illersasquatch 2 ปีที่แล้ว

      Humira doesn't do anything. Neither does sulfasalazine or any of the other bs. Took me years to get diagnosed and since finding out the Healthcare system has done absolutely nothing to help me. I was in the best shape of my life, was chasing dream of playing pro golf, did my yoga every mourning, and even before bed sometime. I now take whatever opiate I can find because I get zero help from doctors, rheumatologist, and every other occupation in this country that cares about money more than peoples quality of life. And yes my mornings take hrs to get lose, but do Dr's have any idea how hard it is to have to do yoga before work or all those little things that cause yiu pain the entire time. I'm so fn sick of living in pain. I'm even sicker of not being able to prevent any of it and ofcourse I can't get opiates for the pain because of the fyntenal epidemic. The Healthcare system and all you heartless doctors should be ashamed of yourself. Not even Healthcare chooses people before money in the DIVIDED STATES OF AMERICA AND OUT CORRUPT EVIL GOV. WHY IS THIS HAPPENING TO ME? WAS DISGNOSED LIKE 5YRS AGO AND NOTHING BUT OPIATES TRULY HELPS WHEN I REALLY NEED IT...LIKE EVERY MORNING TRYING TO GO TO WORK, BUT OH YEAH, I LEFT MY JOB BECAUAE I COUKDNT DEAL WUTH ALL THE PAIN AND NOW I DONT FN EXIST! I JUST WANT TO DIE OR FOR SOMEBODY TO CARE ABOUT MY QUALITY OF LIFE BESIDES ME! IM NOW 37, BASICALLY HOMELESS, JOBLESS, AND EVERYDAY IS A STRUGGLE. IVE ALSO HAD TO TURN TO ANYTHING I CAN FIND TO HELP, WHICH OFCOURSE MADE MY LIFE EVEN WORSE. IVE LOST EVERYTHING TRYING TO FIND A WAY TO LIVE WITHOUT CHRONIC PAIN AND THE ONLY WAY IVE FOUND IS THROUGH OPIATES....AND NOW IM JUST CONSIDERED A JUNKY WHEN IVE NEVER REMOTELY ACTED LIKE ONE. WHEN WILL THE NIGHTMARE END???

  • @Euphoria_Rose
    @Euphoria_Rose 10 หลายเดือนก่อน

    Just been diagnosed with Ankylosing Spondylitis and startedy infusions today

  • @jessicamariche3999
    @jessicamariche3999 2 หลายเดือนก่อน

    So i have a positive ana (autoimmune positive)...ive been told its lupus and fibromyalgia but also rheumatologist thinks it could be AS...is that possible to have all of those problems? -I also want to note, i have horrible SI joint pain with xrays showing some damage, pain in shoulders, in knees, ankles and sciatica. pain.

  • @Irenioskamoska
    @Irenioskamoska 8 หลายเดือนก่อน

    I wonder why can it be in tendon and in articulations, they are different things

  • @jacklynnroskey1981
    @jacklynnroskey1981 ปีที่แล้ว

    I have been on Otezla for 3 months and my psoriasis isn't getting better. I am positive for the AS gene and my doctor is dismissing the fact that I could have AS and psoriatic arthritis; even though I had another doctor (my primary care doctor) tell me that I have PsA. I have a lot of symptoms of both. It feels like since I have been on this medication that my symptoms for AS/PsA has gotten worse. She did say that I have a lot of arthritis in my neck according to the x-rays and that she thinks it's osteoarthritis and not AS or even PsA. Most of my psoriasis is on my scalp and I think that since it's there that it could very well be PsA or a hint of AS, because women develop AS in the neck. Do you think that my psoriasis isn't getting better because AS symptoms are not getting treated? How can I convince her to treat me/diagnose me for AS?

  • @skyk2349
    @skyk2349 ปีที่แล้ว

    I have 4 of these

  • @bluesdirt6555
    @bluesdirt6555 2 ปีที่แล้ว +1

    I have DDD really bad, but recently have been having problems with my sternum and ribs and heal .

    • @dc.pentrumesteri4893
      @dc.pentrumesteri4893 2 ปีที่แล้ว +1

      Iacelasi probleme am și eu mă doare sternu nu pot trage aer a. Piept că d al lovesc se aude sec că scândură coastele mi s-au fibrozati așa este la tine ?

  • @helpfulinfo365
    @helpfulinfo365 ปีที่แล้ว

    If I think I may have AS, what type of dr do I go to first? Both parents had RA.

  • @dianaherrera1284
    @dianaherrera1284 ปีที่แล้ว

    Opinions on stem cell treatment?