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- เผยแพร่เมื่อ 19 ก.ย. 2024
- Diagnosing Multiple Sclerosis is tricky. Every person who suffers from Multiple Sclerosis can show differing symptoms which can make diagnosis a tough and sometimes lengthy process.
My Multiple Sclerosis diagnosis was a long winded process. I was originally told my symptoms were too sporadic and was transferred to a sleep consultant and diagnosed with possible Restless Leg Syndrome. It wasn't until I experienced some crazy vision problems I was finally diagnosed with multiple Sclerosis.
Before diagnosis my list of symptoms were:
- Chronic fatigue
- Headaches
- Skin/ limb pain and numbness
- Skin burning/ hot patches sensation
- Pins and needles
- Urge incontinence
- Itching
- Sight disturbance
- Eye/ visual disturbance and eye pain
- Spasticity
- Muscle stiffness
- Brain fog
- Co-ordination issues
- Dizziness
- Vertigo
- Neuralgia
- Restless legs
- Lhermitte's sign
- Digestive problems
- Limb weakness
- Sound sensitivity
- Temperature sensitivity
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I think every chronically ill person can tell many stories like yours... It is not a question of diagnosis. It is the story of not being taken seriously...
You are so right wtf I've been told I have a broken piece of bone in my foot but it's like hey what about me having effin spasms in front of u??? I am still battling to get diagnosed but I need to get on something fast because I have trouble walking.
Good luck, friend.
I am crying listening to you describe what you went through and the worst thing is that thousands of others are going through the same horrible experience. I am in the US and doctors here are terrible also. Doctors will not think outside of their little box!! They only want easy patients they can give a pill and send on their way. My 1st symptoms were in 1999 when my arms were so weak I was afraid to hold my new grandson for fear I would drop him. I was not diagnosed till 2009. I worked at a medical clinic of 90 doctors for 20 years and knew all of them. I was told that because of my fatigue and leg weakness I "just need to exercise more" After being blown off for so many years I felt like the doctors thought I was nuts.. So I quit going to the doctor.. In 2009 I was so dizzy that I fell off my chair at work and a Nurse Practitioner thought I might have an ear infection, walking back to an exam room so she could check my ears she listened to what I was saying and in under 2 minutes she suggested because of my history of Migraines she wanted to order a MRI (She suspected MS but did not tell me at the time). It took me 10 years to get a physician who actually LISTENED. This NP figured it out in minutes because she listened to what I was saying. This is the saddest part of our medical system today.
Thank you for sharing. Deeply appreciate. ❤
Thank you so very much. I've had symptoms for years and am just now bout to get diagnosed... I think. Probably. Most likely. Just had my second MRI. You know how it goes.... I just wanted to say thank you for your post about your situation. And thank you so very much to the creator of this video. Love to the both of you!!
@@Sandra-h5x5y do you have pain symptoms mine was clear 4 years ago have to have another next year it's fybromyalgia they say my.mum past severe ms this year huh
Sounds like my story and I agree with you about doctors. They are not helpful. Going thru a really rough time right now and am seeing a new neurologist now and hoping he will help me. Can hardly walk anymore.
I literally said the same thing yesterday! The medical community doesn’t think outside the box! It’s almost like we shared the same dream! Wow! I’m seeing my NP in my neurologist tomorrow. I had a stroke last month and it seem to wake up something 😢
I was diagnosed with MS right away because I lost sight in my right eye like over couple of days. Was a school bus driver for 15 years and October 30 of 2013. I could not see out of my eye. Went to eye doctor that same day because my sister worked there. Doctor new something was not right. Saw specialist next day for MRI. Said was MS. Never re gained sight in my eye and lost my job. Sucks, tired all the time but been ok over the years. I believed God is keeping me pretty good considered what I’ve been through.I’ll pray for you. God Bless!
I completely feel you on the Dr. Experience as mine told me "it's called getting old" I was 34 with pain weakness and bladder incontinence at 34 so then I get sent to a pysichiatrist bc "it's in my head or I'm just trying to get hydrocodone" I was actually relieved to get a Ms diagnosis to prove I wasn't crazy to myself.
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I'm sorry you went through this. I've been through this..
Ho no that’s happened they think everything less me
I was just dismissed by the neurologist and its so discouraging to get help. Diagnosis is by far the hardest part. Im still fighting. Women get told to go see a psychiatrist
Oh yes! Diagnosis is hard, especially, like you have said, it is insinuated you have a mental health problem. MS and anxiety etc can go hand in hand sometimes but it’s always best to get everything checked out. Our health care providers need to be more in tune with invisible illnesses and listen to what we are trying to explain. Keep on fighting! You know your body best xx
I was sent to a pysichiatrist as well, it's sad to be treated like your crazy on top of the struggle and confusion of symptom onset.
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Well I’m not a woman and am on my 6th neurologist in a year. I’ve been told to see a psychiatrist at every single one. I go to the local MS center on Jan 10th. It’s already bullshit to be dismissed by every doctor you see, including ER doctors and the GP you’ve had for years but then to go online and read dismissive comments like this make it even worse.
I hope you got some answers
I am currently experiencing the same thing. Funny thing is my therapist and dietician even think there is something wrong physically and it has nothing to do with my mental health or eating habits lol so next time the docs say anxiety ect I'm coming back with no mate my phsyc says I'm good it's not your job to diagnose my mental health it's hers just focus on my physical health please
It’s terrible fighting an illness but having to fight the medical system is exhausting all the best 👍
I have been diagnosed with MS for a year and half. I'm 73. About 30 years ago I was experiencing many of the symptoms you describe. Unfortunately my lovely lady dr. was off on maternity leave and her husband was looking after her patients. He was very dismissive and said I was depressed. I told him I wasn't depressed, but he insisted I take a script for anti-depressants, which I didn't take. I had to go back to him because everything was getting worse and again the same outcome. Finally my Dr. came back, listened to me and said she thought I had fibromyalgia. I was elated to have a diagnosis to work from. It took another 4 years to get a confirmed diagnosis. In retrospect I'm wondering if it has been MS all along. The symptoms are all the same as fibro. I've always sought solutions to problems and I feel helpless. There are amazing Doctors out there but there are far too many who seem to be in it for the power and prestige. There needs to be a reckoning!
It feels as if your telling my story. I,m 61, struggeling for many years and my docter is telling me I,m to old for a ms diagnose. It's hopeless
Just lost my mum to severe ms I have fybromyalgia we both now know have heds had MRI 4 years ago all clear main symptoms pain nightmare
I feel your frustrations. I'm not yet diagnosed and on my 7th neurologist. My worst neuro experience was while walking down the hall to meet neuro #5 I was greeted with "Boy you walk funny, now walk right!" Then after explaining my symptoms heard..."Funny, the patient just before you complained about the same things!" When I responded with "What are you trying to say?" He said "You know, financial gain!" I was absolutely disgusted at such unprofessionalism it left me completely speechless. Needless to say I never returned. I truly feel for all the unheard out there. Keep marching on til you find a good human. I'm praying that #7 is my answer man 🙏🏻
Sorry to hear about your experience. Hope #7 was okay.
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Thankyou, however, #7 didn't even know what an MS hug is. I had to explain it🤦♀️
That’s horrifying!
@@bevee3711
It amazes me how "challenging" (I'm being kind) the medical profession is around my area these days. However, I must say, it turns one into an extremely strong individual who can tolerate pain at its greatest. I don't know if that's good or bad though🤦♀️
@@EMS-hp9tf I agree 100 percent… psychologically as well, sadly.
You should never have to push the medical system. My wife Colleen was diagnosed at 13 and is now 42 and still doing well, but that isn’t much to do with the medical system. She has done so many things to help herself because outside help really wasn’t there. She tries to do it through supplements and exercise and diet. Mentally she works through it all on our TH-cam videos because she finds even mental health professionals don’t “get it” as much as our followers and subscribers with MS. Keep sharing and keep strong!
Would you (or your wife) be very kind to share those channels and videos where she got help and support from?
Thank you very very much!
I checked utube under dadservations MS and I found utube he was talking about his wife’s MS. I don’t know how to copy and put a link.
Thanks for telling your story - i was diagnosed last year with MS after I went blind in my left eye. Still blind in that eye and never recovered sadly. My first neurologist was also horrible. Sat me down and with no introduction said I had MS. Didn't provide any explanation, didn't have any follow up discussion about what it is, how bad it is, treatment options etc. I was just chucked out the office in 10 minutes and told to have a nice day. Was a horrible experience. Nobody should be treated the way you or I were. There is no compassion in it and it makes a horrible diagnosis that much more difficult to process.
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If you have experienced blindness in either eye, you have something seriously wrong in your body ! They should have treated you with more respect. Probably involving the optic nerve. You should investigate Lyme disease. This is serious damage. caused by invasive organisms. Basically your nervous system is getting eaten up. There is treatment available. Please don't give up.
@@hondablack1 💔❤
@@hondablack1 Was officially diagnosed with MS sadly with follow up MRIs, was also tested for lyme. My first relapse happened 2-3 weeks after a covid infection. I half believe covid may have triggered the immune response as prior to this I have experienced zero MS like symptoms, I am almost 30. It was indeed optic neuritis / inflammation of the optic nerve. Sadly the damage is permanent. I also found out afterwards that they only put me on a "short" steroids treatment - which seems to be a mistake considering the severity and life long implications of being blind. If I had the choice I would have opted for the full hardcore session of steroids to get rid of any inflammation. I hope now that I don't have another attack of optic neuritis in my good eye. Not quite sure what I would do with my life if I went fully blind. Thanks for your comment :)
Hi from Rio de Janeiro! I am a neuropsychologist and I learn a lot from personal experiences!
I do hope you are well and I know sometimes can be difficult, be self gentle.
Make life simple is all about!
Self care, exercise, good nutrition…
* I always say find a neurologist to trust, they are up to date with the latests news on MS and forget Dr. Google because experiences are not the same!
I find it so interesting that in the northeast of Brazil, near the Equator, there is one case of MS for 100K people. So Neurologists in Brazil , most of them, suggest intake of vitamin D3 as well.
Science , globally , is studying the brain as never before, and the last decade is a prof of that.
Lots of new modifying drugs now , so remissions are longer now, if any!
Being self gentle and a healthy life style makes a difference!
It is great also to hear that pregnancy was a beautiful experience to you 😍
Hope you, your husband, kids, all are well! Take care! Love from Rio de Janeiro!
Can I ask you something? I've been to Brazil last year in september (I live in Europa), and when I came back about a month later I lost my endurance and little by little I also lost strenght in my legs, needed to walk holding the wall. I lost my ability to dance, skate, cycle and swim. Eventually I got a cane, but am also expiriencing pins and needles, a feeling of ants walking over me, both my legs and left arm are always very heavy and sometimes very painful. The same heavy feeling has recently started in the left side of my face aswell. It has now been at least 7 months doing all sorts of tests and I am waiting for my next MRI. They ruled out any tropical diseases.. But I am wondering if you maybe know of some rare issues that are only known in Brazil that I should be warry of?
MS symptoms are different for everyone but I think the one thing we can all agree on in the UK is how long it takes to be diagnosed. My GP fobbed me off for years before I finally had enough and saw a private Neurologist at great personal expense. MRI and MS diagnosis within a week. The NHS is broken in the UK. GPs are not experts in MS, most have no idea about it. I later found out that GPs are fined for each referral to specialists!
I’m lucky that I have always had lovely GP’s and have been listened to. Recently I’ve had a colonoscopy, gastroscopy, MRI and trans vaginal scan to rule out cancer due to my symptoms. All of these tests were done within four months - oh and also a CT lung scan. I’m in the south east so maybe I’m in a good area, I don’t know but I personally can’t fault the NHS and their pay doesn’t reflect how good they are. I find it so sad some people go through this kind of treatment. As for fines - I have worked in the NHS, my daughter is a hospital manager and we both don’t think this actually happens.
@@FredaFlynn2008 I don't have good GP's in the area I am currently living in Scotland. I have had in the past. But yes, both my mum and brother are a top grades nurse and consultant (MRI radiologist and has ms himself), but neither have heard of GP's being fined for referrals to specialists.
❤ "Universal care" in Canada is the same.
No disrespect to nurses, but GP's are just glorified nurses.
Nope. I work in the NHS, my brother is a consultant and my boss is a GP. No fines for referring on to consultants.
Thank you so much for this video. I've only just found your channel. It's 4.00am in the morning, Im crippled with pain, unable to sleep for days and severe weakness now everywhere in my body. I felt like you were telling my story. I've been trying for 10 years to get a diagnosis and treatment and still fighting for one. The worst is the rudeness from so called "experts". Especially neurologists! Its somehow reassuring, in the wee hours of the morning, when you feel like ripping out your hair with frustration, to hear that you're not the only person navigating the health professions (Australia) that are so shocking when it comes to getting help, getting a diagnosis for MS and other neurological disorders. Thanks for being vulnerable and sharing your experience ... its very helpful xx
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Canada is the same.
This popped up as a suggestion out of nowhere. I have every symptom you listed and more plus I've been diagnosed with menieres disease, trigeminal neuralgia, occipital neuralgia, fibromyalgia, ocular migraines, essential tremor. I have asked 3 different doctors to be referred to a neurologist and been refused every time. Not because I think I have MS but because Trigeminal neuralgia is absolutely horrific! And now, listening to your story. I feel so angry that regardless of what is going on with me, it seems like I should have been referred years ago to rule it out.
Side note. I get my glasses from eyebuydirect because I need new ones a couple of times a year. I couldn't afford store prices.
I am under the belief that I have MS as well as Vasculitis GPA (unfortunately in my brain) and Fibromyalgia but some of my symptoms go hand in hand with your symptoms and don't seem to be related to Vasculitis GPA.
I have fibromyalgia too. They almost didn't test me for MS before they diagnosed me with fibro but I asked my doc to and they did an MRI. 9 years later I'm having some neurological symptoms that I don't think is fibro, and I'm off to be tested again on Wednesday. I get heaps of neurological symptoms with my fibro that bother my, I worry it's something else. This time was numbness on left face, arm and leg. That's what got the doctor to order the tests again anyway.
My MRI is towards the end of June. It can't happen fast enough at this point. The neuralgia and numbness in my leg has caused me to stop working at least temporarily. That means nothing to distract me from everything and it seems to feel worse. I'm more concerned they WON'T find something and I won't have answers because there's a 2+ year wait to see a neurologist here unless you have something on an mri, then it's about 3 months.
@@Em-vj8sm I hope it all goes well for you and you find the answers you are looking for.
I’m sorry it took so long for you to be diagnosed with MS to start treatment. I was diagnosed with MS a few years ago after I started getting blurry vision. Fortunately, those symptoms have improved and I just get very tired here and there. I think what has helped me the most is exercise and avoid stress as much as possible by asking for help with whatever is causing you stress. I’ve noticed stress really hype my symptoms.
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I can relate to your experience and will add it's hard to advocate for your health when you're ill and have neither physical or mental capacity. In my case I have to feel mentally strong to keep dealing with medical profession it's beyond frustrating and can set your recovery back. I'm a never give up person but note it can take years. I wish everyone well with their health journey and hope our voices are heard. Thank you for sharing and inspiring others to get help.
Thank you for telling your story. My sister was misdiagnosed for years. This disease is terrible. I hope you find comfort every day. ❤
Im shaking my head in disbelief. I've got such a similar story. It's sad. I thought they were there to help.
Good for you ! You stood up for yourself in a respectful way not like the so called professionals! You are an inspiration!!
I'm so sorry that happened to you. We are truly our best advocates, especially at the worst moments in life. ❤
That's almost everything I've been feeling. So hard for my husband to understand the pain I'm in everyday all day. I can't work and he don't understand. I filed for disability but the only diagnosis I have so far has to do with back issues I've had for the past 30 years. Thanks for that list...I will talk to my Dr about MS.
I find it is very difficult to explain to people who haven't experienced it. One of the hardest things is not looking like you feel. People think you are okay. It's definitely worth talking through MS or some other autoimmune stuff with a DR, even if it helps rule conditions out. The closer you get to an answer the better equipped you'll be at finding what can help you feel a bit better xx
Don't take no for an answer. If you Dr does not refer you to a neurologist.. get a new dr. there are tests that can confirm if MS or not (Lupus or something else). Ask for a spinal tap along with your MRI. Keep forcing them to respond.. you deserve to know. Be proactive and not reactive. If your Dr & Nero are vested - they can find what is going on. Good luck.
Doctors in my area in UK don't do referrals period, they just fob you off and you need to wait a month for that privalige. I know for a fact if I ever get cancer with this health care system then I'm as good as dead.
I am in the middle of my own Neurological diagnosis and have had more than one doctor telling me to join a gym, or distract my mind. It is infuriating! I am sick! I am so sorry you went through this too!
Thank you so so so much for posting this video. I don’t know if I have MS, but am going to have an MRI done this week or next. Your symptoms sound almost exactly like some of mine. I get random spots on my arms, and sometimes legs, that come and go that feel like “cold burns”. When I told the neurologist about them, and the crawling hot ants sensation beneath my skin that you also described, he said that it wasn’t relevant to his line of work. He said that people with MS don’t get random fleeting nerve pain like I was describing.
He told me the exact same thing as your doctor told you- that I have anxiety and depression. When I told him that I have a masters in counseling psychology and have worked as a therapist, and that I know that the symptoms are not caused by anxiety or depression, he said the same exact thing to me! “I’m the doctor.” I’m only 7 minutes into the video and have been audibly gasping the entire time! It feels super validating to hear you talk about your experience. I’m so sorry you had to go through this. Doctors are often so quick to pathologize and ignore women and queer people. So grateful I found your video. Sending love and healing your way
So sorry to hear you are going through similar struggles. I found it strange how I had to almost fight for help. Some doctors unfortunately put their 'diagnostic feelings' first before fully understanding how we feel as individuals. Great to see you have a masters in that subject, it may be helpful having that expertise when Doctors are trying to tell you that its 'all in your head'. I can 100% say that random fleeting nerve pain is real in people with MS! I say this from my own personal experience and from many others I have spoken too. How could a Neurologist say that your symptoms were not in his line of work, this is awful. I hope you get some answers from an MRI... sometimes they will perform this with a contrast dye to show up any current activity. If the people you see don't offer you a lumbar puncture test, maybe mention it to them, it's another test which can help within MS diagnosis. Thank you for your kind words, I know the video is a long one but there was a lot to cover. Keep on with your diagnosis journey, some people have a difficult time but we get there in the end. It's not the fact that we want to find something, it's the fact that we all want to know what the weird stuff is that's going on. I'm keeping my fingers crossed for your MRI and that you get a more sympathetic neurologist. Please let me know how you're getting on if you feel its appropriate for you. Love and hugs xx
Thank you so much for your time and energy, both of which I realise are very difficult find and then give away. You seem like an inherently thoughtful and genuine person I have happened to stumble across during a period where I am completely hopeless and in need of not only answers but of understanding that I'm not alone in the diagnostic period. That it is misdiagnosed with mental health problems, that symptoms are often dismissed, GP's don't have all the answers and it comes down to you to find them, not to give up and accept that "it must just be the way I am" even when putting your head down and closing your eyes feels like the only thing you're capable of doing anymore.
Best wishes to you for a slow and steady journey.
Thank you 🌻
Hi Simone, thank you for such a lovely reply. You are welcome, I do what I can when I can as I couldn't find what I personally was looking for when I was diagnosed. There is a lot of help through charities however, I sometimes feel it's not as truthful as most would be looking for. some information almost feels disingenuous. I understand the feeling of being hopeless, you will I'm sure of it, find the strength you need to pull through this period! I have faith in you x lots of love sweetheart x
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I had to say, very strongly, I CAN BARELY FUNCTION. I AM BARELY ABLE TO DO ANYTHING. Why should it have to get to that point?
My doctor one time said, yes she treats physical symptoms, but she she also treats people. Because we know what we are going through and a lot of times its written off by doctors. She said the most important thng to do is... listen. Listen and compare symptoms and experiences to issues it could be, then apply her education to it. She will get creative if need be because you can't see, ir test for a lot of symptms.
She's amazing. I wish all doctors were like that. My whole life I've been with dismissive doctors. Because I was too young for my problems to be real I guess.
I had a nearly identical experience with physicians as you describe. I started experiencing bone-crushing fatigue about 2 years before my full-blown clinically-diagnosed case of optic neuritis, and spent a lot of time in the doctors' offices trying to get answers, was told "you are just stressed out / depressed / working in a challenging career" or some variant thereof. Even *after* the optic neuritis, I saw a parade of different neurologists, and every single one of them was dismissive of my situation! They said the white lesions on my MRI were caused by migraines, and that because I appeared to have recovered from the optic neuritis attack, then I was doing OK, right? I also went through the whole sleep test thing. I gave up. I was so sick of seeking answers from dismissive and rude doctors. (One of the neurologists had an ink pen fall out of his shirt pocket as he got up out of his chair. He said that he needed to go take care of some urgent personal issue and would be right back, but could I please reach under his desk and retrieve that ink pen for him while he is away? I let the damn ink pen sit there on the floor, and had a crazy internal debate with myself regarding whether I should get up and leave right then or there. Anyway, a few years of terrible fatigue, then optic neuritis, then **15** years of more fatigue, onset of limb weakness, weird cases of uveitus ... and only after a routine visit to the optometrist for a new pair of glasses, did I eventually get an MS diagnosis. Turned out that the optometrist had a new tool in his office that he wanted to use ... a scanner that measures the thickness of the retinas ... and my unusually thin retinal nerve fiber layers in both eyes (but especially the one that had the optic neuritis attack) is what led to yet another neurologist appmt (the first in about 10 years, after I decided to accept my fatigue and all the mysteries of what was causing it). That neurologist actually listened to me, tackled my case like a detective solving a mystery, and concluded that those same MRI white spots that had been dismissed 15 years ago as migraine-related, in fact, had exactly the shape characteristic of MS lesions (ovoid, extending radially awar from the lateral ventricle, etc). So ... maybe about 20 years of undiagnosed, untreated MS. Sigh.
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Good lord, sorry to hear it took so long. I have some neurological issues but not ms at least not officially. Anyway, it takes so long to figure things out that it is aggravating. Go to 10 doctors, go out of state, see him, see her, do this test, that test, and 17 years later I have similar issues with the long process of a official diagnosis. My friends grand pa had cancer. Well the first scan at one hospital he was told was ok. Nothing was seen. Then quite a while later he went to another hospital and they looked at the sa.e scan and said he had stage 4 cancer. Same thing happened to my friend I canada. She had an infection in her stomach and they did a scan and said looks good. OK so months later she was still sick an she saw another Dr and they read that same scan and said oh, you have a serious infection called peritonitis. She ended up needing surgery. Its crazy. I really don't trust the system anymore.
@@doubleaaaron Gosh, I am so sorry that you've had an equally long time to remain in limbo without answers. And how terrible that your friends have so severely suffered from acute illnesses that went undiagnosed for an inexcusably long time. I'm not sure what needs to change in our health care system, but fundamental change is definitely needed.
@@doubleaaaron Thank you for sharing. Take care.
I greatly appreciate your transparency with your story. Currently starting CNS testing. I have wondered if MS for a long time. Many of your presenting symptoms are similar to mine. I’m sick of feeling like a crazy person. I KNOW MY BODY. I also have trigeminal and occipital neuralgia. I wish I could fast track everything.
You are welcome, I feel the best way is to be transparent and real about these things. I feel you with the crazy, a lot of people, even doctors, do not really understand. You are absolutely correct, YOU know your body! don't ever come away from that! I wish I could fast track for you too, I hope the CNS testing goes well and you find some answers soon, also some relief from your symptoms as I understand they are tough x
Would definitely see if you can get an MRI - that is one of the best ways to rule out MS.
Listening to how you visited the gp and his response was "you're anxious and stressed" is what I hear all the time. My symptoms are getting worse, my vision is going in my right eye, I have lot hearing in my right ear. Loads of numbness around my body.
I too use to feel fit and healthy. I'm a personal trainer and coach and iii know how my body feels! I said the same..... I know exactly how my body feels. Anxiety doesn't bring on vision issues or hearing issues. I have been sent away from A&E last night saying the same. They said "we've done the scans and they are all normal".
So luckily, now I'm seeing a neurologist in December...... but these are getting worse. I feel fobbed off so much by the NHS amd no one is listening to all of the symptoms.
Your video could be me talking! Seriously!
This has made me feel like im not alone! So thank you for your story!
Best wishes
Been watching for 9 minutes and you make SO much sense! Thank you for taking the time for us! ❤
Thank you for your kindness, reaching out to those of us, who knew in our hearts that we just didnt feel right. Hearing your story is reeassuring that we are not alone in this diagnosis. i feel a kindred spirit in you, describing the very symptoms i've been experiencing over some 20+ years now and just putting it together.i admire your strength and tenacity, it is a reminder amongst it all that we still have a voice & to never give up🧡
I'm in the US and I have had MS for approximately 12 years (I suspect longer) and my diagnosis came after optic neuritis in my right eye after occasional subtle symptoms for 10 years. I mostly deal with slight numbing and fatigue on occasion. The 2nd flare I had that felt substantial was vertigo. I had unstable balance for 3 weeks but the actual spinning lasted about 12 hours. I deal with Lhermitte's sign but its not an electrical shock its a vibration that goes from the neck to the top portion of my spine. I definitely think my bladder and bowel issues are from MS as well so thankfully medicine helps with frequency and diet change has helped with digestive issues. I still have symptoms flare up from old flares but usually if Im not sleeping well or if I get overheated. Summer can be tough on me so I stay out of the sun and take short breaks. I garden in the evenings now. I currently receive an infusion every 6 months (Ocrevus) and my scans came back free of new lesions after the 1st year. I was not experiencing flares every year though so I cant know just yet if it's coincidence or if the medicine is working. The absolute best way to help MS is to get diagnosed as early as possible to interrupt future damage from occurring. I received a diagnosis immediately with my optic neuritis and did not have years long worth of dr.'s being either dismissive or trying to only treat the one symptom that may have been experienced but I know so many have that story and my heart breaks for them. My eye dr. knew right away that there wasnt anything wrong with my eye and told me I needed a brain scan and referred to neurology. My optic neuritis onset to healing was about 6-7 days. He said if it were a problem with the eye I wouldn't have been getting better so quickly especially without medical intervention. I have embraced my MS and I gift myself slow and easy mornings and I make sure I get plenty of sleep. I stay on top of my medical appointments and always discuss any new symptoms, even if it may not be related,.
Great video! It is super detailed and oh so heart breaking to hear you were dismissed by that neurologist 😢 I also feel warm in my face when I experience these symptoms: Muscle aches, joint pain, weakness in arms I can't lift them longer than 15 to 20 seconds before they start hurting and getting tired, muscle spasms, balance issues when walking, cog fog, speech difficulties where I stumble over my words and have trouble recalling words, nap straight after work, tremors when I'm feeling cold and not cold, tingling crawly feeling like a bug is crawling on me, cold feet and sometimes hands . I also have ADHD just diagnosed. I had an evaluation done in 2015. I was 21ish and saw a neurologist. He did the needle test on me where he stuck me with needles and tested different parts of my body to check my nerves (I forgot what that test is called). The only thing he found was my left side of my body is weaker than my right but nothing significant. Nothing happend after that. Now since March 27th I've been experiencing all same symptoms I mentioned earlier again to the point where I was crying last night from the pain and overwhelming sensations. My mom suggested I'm probably dehydrated and that helped a little drinking water/ electrolytes. Can dehydration really cause all the symptoms I'm experiencing? Is this enough to seek another evaluation from a different neurologist? Should I see a different specialty doctor? I'm lost on what or if I should so something about this. Sorry this is long and thank you for anyone who can guide me 😊🤗
Thanks so so much for this video. I found it so helpful. I think most of us would agree that gp's are dismissive. I have been struggling for several years and have had to go part time at work due to all my symptoms. I got a referral in December to the neurologist and that appointment has come through for August so not long to wait now. I would not have got this referral if it wasn't for the fact that I had a flare up (just like the one's I reported to my GP many times before) at work and an ambulance was called as they thought I was having a stroke. The A&E doctor wrote to my GP to make the referral.
Hello mam, How are you?
I came across your video today for the first time. I heard the entire almost one hour story what you told about yourself. I feel very sad that one side you were suffering from the pain and the other side doctor's behaviour. I had a few same experiences with doctors. Sometime I am confused if they are doctors or butchers?
Your pronunciation was so nice that I could understand it all. Also the way you spoke was very kind and slow. Very touching words. I was stopped at your video because I was surfing on internet and saw the word MS. Now a days I am expecting a 28 years old a friend of a friend who is suffering from MS. I intend to help him with a product what I used myself when I face problems with my muscle loss and power loss and more...
After I faced the problem I studied about the problem and started looking for solutions. And at the end I found a product 100% natural, which helped me and I feel much more better now. And then I studied further about the product. I will be very happy if that friend can get better with the same product. Could you tell me how you feel now? I live in Germany. Is it possible to talk to you by phone? Will be highly appreciated.
Thank you in advance.
Stay well and keep smiling
mind to share name of product
Probably another scammer. Trust nobody!!!
I can't believe it took 5 years to be diagnosed! I really feel for her. I have met doctors who didn't seem to care.
I am sorry for all that you endured. Thank goodness you had the fortitude to pursue other doctors.
I have been through a similar situation. I knew there was something wrong with me.Rather than accepting 1 doctor’s (opinion) I sought 4 opinions for the same symptom.
I eventually had 5 surgeries, and I was diagnosed wi CRPS. complex regional pain syndrome. (The symptoms are pins and needles in my foot. It has now expanded no my leg.
Don't give up. Keep seeing as many doctors as you can.
God bless you. I hope yoy feel better.
Had this year in my pelvis with CFS now fybromyalgia.mum.had severe ms but they say it's not
Not diagnosed yet: I have fatigue that I have described to my husband as
feeling so fatigued that if I don't just lay down and try to sleep that I'm going
to cry or collapse. I am not a crier but that's how it feels. I have had severe
tremor following heat exposure and frequently it makes my heart race. I
also get overheated and sweaty in temps that other people are unbothered
by. If I try to do weight training, I am severely severely sore for 4-7 days. I
have recently experienced pain with eye movements and double vision with
eye movements. I have a appt coming up with the eye doc in 5 days. I am
also experiencing issues with high contrast web pages. It looks like the
words are 3D like above the page. If that makes sense. I lose my balance
when my eyes are closed. I lose my balance and tilt sideways at times.
Bright light, sunlight or artificial is intolerable. I love my sunglasses.
Flashing bright light is extremely bothersome. Continuous loud noises are
intolerable. Too much going on at once is overwhelming, ie. multiple
conversations in a room, loud TV or music plus trying to have a
conversation, trying to pay attention to multiple things at once such as
while driving. These things used to not be an issue. I am having problems
paying attention to more than one thing at a time, so I stopped driving. I
cannot see the dividing lines on the road at night when it is raining at all. A
few years ago I had to get a hotel on a trip because I just could not tell
where I was on the road. Sometimes when I'm talking, a word comes out as
a blend of 2 different words. Like my brain couldn't decide in time and
blended the words. I terribly easily forget what I was going to say or do.
Sometimes I feel like I can't swallow, like I forgot how. It usually lasts 10
seconds or so then i can swallow again. Of, course I get tingly pins and
needles sensations out of the blue in places. My face, thigh, and one foot
have lost a lot of sensation. My jaw sometimes jerks shut involuntarily
when I am eating involuntarily and I bite my cheek. Sometimes when I am
working, I involuntarily click the mouse. I get startled very easily and
overreact. I seem to get choked up more when eating than before. Frequent
urination night and day. Headaches. Neck pain. I sometimes forget what I
just read and sometimes have to reread a passage 2-3 times. I get a lot of
muscle twitches in my face and arms and eyes. Sometimes spasms..legs,
feet, jaw, back. Painful rectal spasms. I have IBS. Occipital neuralgia. Once
I dropped my glass of water for no reason. Just could not maintain my grip.
I got another glass after cleaning up and walked away and it happened
again. I dropped it. So frustrating. I also have been diagnosed with
dysautonomia
could it possibly be motor neurone desiese?
@@christenedoering7720 I went to the eye doc for that appointment and he noted pendular nystagmus. I am not sure what it could be but my MRI of brain and cervical spine is scheduled for this Friday. Thank you for your response. I am going to look into motor neuron diseases. Thanks!
If not MS , then what about Chronic Fatigue Syndrome ??
Did you get a diagnosis?? My symptoms are very similar
@@ashmitasharma719 they found a spot on my brain and it is being monitored.
Thank you for sharing your experience. I am going to Neurologist in 2 days. I'm dreading it because of my past experiences . I have Drs. Saying something is wrong with me but no answers. I went to so many Drs and specialist to no avail. I'm on disability for chronic pain and fatigue. The judge could not believe the amount of medical evidence but no diagnosis. I went half blind in my left eye, every professional thought it was a tumor. This story is long so I'll try to shorten it up. I have 90 percent of the symptoms. The crazy life started after hysterectomy in 2015. Took a team of specialist and hospital stays to figure out I had cancer. Got rid of that With chemo. I never got better, it's hard for me to look back without getting emotional. It has been be traumatic. everything including days now I feel like I'm falling apart. I have RLS and they say fibromyalgia which I'm sick of hearing. I watch hours of TH-cam so that it validates my thoughts. I might start a vlog. I would need help from my family. I forget so many things. That and pain are equally bad. I almost never leave my house only for appointments. I have a beautiful art/craft studio, I cannot sit. My l1 through L5 in my lower back is torn and some are bulging some are torn and some are slipped. Ok enough out of me. It's 4:30 in the am. Been up since 3:20 because I cannot sleep, the pain and restless legs wake me up me up. Take care and God Bless all of you.
How are you doing? I’ll be going to see a dr soon… I hear going gluten free and dairy free is very helpful.
For the first time, I feel like someone has explained my life in the last couple of years. And just right before Thanksgiving, I had gotten a very bad migraine headache which caused my blood pressure to spike in the danger zones. I was in the hospital for 10 days which Led to lots of test. MRI's and spinal tap finally showed up lesions and a diagnosis of multiple sclerosis. Finding a doctor to care and a neurologist for treatment is not easy! But let your medical bills go without payment and your phone will be ringing nonstop!
Still going through the process of getting tests done.
First Doc said I had inflammation and that inflammation plus difficulty sleeping fed off each other resulting in chronic pain & fatigue. He basically said I needed to lose weight and eat healthier. That sounded about right. I got placed on a few meds to alleviate the symptoms. I got better and didn’t need the meds and was fine for quite a few years. I did gain some of the weight back and didn’t stay on track with healthy eating. Symptoms came back but were slightly different.
Pins & needles ☑️
That itch ☑️
Weakness in hands ☑️
Legs feel weighted down ☑️
Both hands jerky movements ☑️
Was like one eye has a dark tinted lens ☑️
Difficulty with walking one time ☑️
One time it felt like bugs crawling under my scalp ☑️
Sometimes I feel like I need to take deeper breaths but can’t. It’s an unsettling experience and anxiety just makes it worse so I just breath slow and tell myself I’m not gonna suffocate this will pass but breathing slowly like mindful breathing no matter how shallow just helps reduce the anxiety and then take advantage of the deeper breaths when they come. ☑️
Off balance ☑️
Fatigue ☑️
The only thing that really helps with fatigue is by managing limitations but knowing the balance between how much activity/exercise one should do because with fatigue a little bit of exercise does help but not too much just like when fatigued sometimes the best thing to do is sleep & rest. It all depends on person to person. Also, I look at what all I have to do during the week and sometimes have to cut something on my to-do list in order to make it through my work week. I also take moments throughout the day to just sit & rest. There’s a fine balance from person to person as each person in unique on what would actually help with fatigue. I believe there is also medication available and that’s pending on if fatigue is a primary symptom of MS vs Secondary Symptom. If the fatigue is Primary symptom there is medication but if it’s a secondary symptom then sometimes an occupational therapist might actually be able to help one with managing secondary symptoms. Some causes of fatigue could be because of gait and if one has stiffness in their legs and is walking with a lack of balance that can be fatigue inducing. And maybe in some areas an occupational therapist can visit your home or work space to find solutions to minimize the fatigue. So perhaps an occupational therapist can help with fatigue symptoms.
Drop things frequently ☑️
Choke on liquids☑️
Sometimes difficulty swallowing☑️
I think I’ve been dealing with this since my 20’s so for at least 20 years without a diagnosis but 20 years ago there was vague symptoms and was very easily dismissed. But all these symptoms including bladder issues can no longer be easily dismissed.
2nd Doc I went to sent me for blood work and a CT Scan and sent a referral for an Electromyography (EMG) Test and after the EMG test I will have a follow up with a neurologist. Oh and I also now have irregularities in my heart rhythm so I’m getting a Haltor Monitor to check my heart function. The majority of these symptoms have come up more recently so I couldn’t remain in denial of there being something wrong. For the longest I just thought it was all in my head, or due to depression & anxiety which has been part of my life since childhood or dismissed because of my weight. This time, I was going to fight to see a neurologist but the 2nd Doc already put those plans in motion with the EMG test. I’m hoping that the meeting with this neurologist will go well and that they will send me for an MRI. But even though I may have had this for 20 years, the symptoms I’d have were usually short lived and for the most part was actually symptom free for much of these 20 years with exception to the fatigue and pins & needles.
Wow! 20 years, it was so much harder back then for people to listen or even take anyone seriously with these set of symptoms, you've done so well. Thank you for such a comprehensive response. Im hoping so much that the meeting with the neurologist goes well, you've lived with these symptoms for such a long time without help. It's such a strange thing to diagnose, as you say, everyone can experience it in different ways. Yes, there is fatigue medication, I'm in the UK, so we are able to take a medication called Amantadine. This helps me massively, but I know other people where it has no effect. Keep on fighting with your journey and I wish you all the best xx
@@mammadoo4977 Do you have MS ?
Hi, yes I do have MS, I was diagnosed in 2018.
Just to clarify:
I had symptoms about 20 years ago that lasted a short period of time.
Much of those symptoms went away and everything else was easily excused away like issues with my weight or issues with smoking or simply chronic migraines and headaches because I’ve always had them. But those weird symptoms in comparison of 20 years were basically gone for the longest time. I basically told myself “that was weird but if these symptoms return I’ll go and see my Doc.
So far I’ve been diagnosed with Neuropathy. But I don’t have Type2 diabetes. So I was quick to mention to my Doc “so, as of right now the cause of this neuropathy is ‘unknown’ “
I’ve also been diagnosed with carpal tunnel in both wrists and similar with both elbows. That could be work related… could be.
One thing I noticed is that my cold flu lasts longer then it used to. Plus I have a chronic cough. Anyways, more recently I was finally over a cold so I tested out my vocal chords and tried to sing and my vocal chords weren’t functioning right and my diaphragm feels weak. So now I’m waiting on an Ear, Nose, Throat Specialist who will take a look at my vocal chords. All I know is that I have difficulty with my vocal chords and I’m either speaking too quietly or too loudly. I seem to struggle to find the right volume. Anyways, I’m hoping that this appointment will lead me to the right tests to get properly diagnosed.
So with this neuropathy it explains the burning and itching feelings I get on my legs but they don’t know the cause of it.
So the symptoms I have now Re-appeared a couple of years ago mildly and during record breaking heatwave of last summer is when things turned bad with fatigue and ability to walk. I could still walk but it took a while to get my legs functional in the morning. That was also when I may have had a few days of this Optic Neuritis… I think. All of which just stressed the importance to see a Doc.
I think I’ve been struggling with that MS Hug for quite some time… perhaps for a few years now. But I can’t find anybody who can answer me this one question… for anyone experiencing that MS hug, do you find that it feels like you get restricted from breathing? Like your chest goes up against the wall as you take in a breath but you can’t breath in more but you know that you need to take a deeper breath but can’t? Anyways, I feel it on my chest and actually maybe on my rib cage (both sides) as well.
Anyways, my appointment with the ENT Specialist is in January next year.
I’m just at that place where being diagnosed with MS would be a relief because if it’s not MS then it’s something worse. I mean, a lot of my symptoms point in that direction but they point in a few different directions.
@@sarah-janemelnychuk541 Hey dear... for your kind information you have nothing else you have just a cronic vitamin deficiency likely VitD3 or B12. Plz go for the test. and yes that is not ms hug which u think that may have a haital hernia or just for vitamin deficiency. God bless you.
Thank you for making this video😮
I can relate I was 18 when I experienced my first ms symptoms I just accepted this as it was all apart of my ‘Lala’ personality 🤪 but now 35 and can relate to your experiences you’re definitely not alone 💪🏻
I really appreciate your more detailed account of how things progressed. It really is very helpful. I am not yet diagnosed. Looking for info and found your video. Thx!
Thank you for pouring your heart out and sharing your story❤ I cried a couple times- watching and listening to you reminded me of my mother. She was disregarded by most doctors too. Thank you for encouraging people to advocate and push.
My PCP and my Spine Specialist have both requested I be tested for MS; Your symptoms are similar to mine, but I’m being affected more in my neck and arms. I’m suddenly blind in one eye. Soooo happy for your video! Thank you!!
Thank you for sharing very informative especially for those just starting out with symptoms but no diagnosis . Please keep well and also please keep sharing with more information of what you are going through .
Took me almost 3 years to get over my diagnosis. Lost my job without my choice. Loved my job. Cant drive a CDL license with only 1 eye. All I no is that there is always someone worse off then me. Lean on God to help you through.
Thanks for sharing. I am insanely fatigued. Yes, I’m a parent and early 40s, but I’ve never felt this tired. Also get random prickly feelings (since HS). and what feels like bubbling or pulsating in random places (maybe really muscle spasms)? Like gas bubbles but in any random place (legs, belly, neck, arm). I get a fluttery feeling left side of my chest but normal ecg. I wake up gasping sometimes and have bouts of shortness of breath, even at rest. I have alway had brain fog and short term memory issues but chalked it up to my adhd. MS has always been at the back of my mind but I’m embarrassed to bring it up to my Dr (she already seems to think I’m just anxious). I think I’ll bring it up.
Fatigue is serious and very rarely taken seriously.
How are you now? X
@@jadep4802 I’m ok. Same stuff going on, but ok. Thank you.
@@2013lovemy did you get a diagnosis?
@@ashmitasharma719 Nope. Have not gone back to my doctor. Considering finding a new one, but have not had the time or mental energy (find it overwhelming and just busy prioritizing the kids). I want to be healthy for them though so will try to do it soon. I did actually email about possibly doing a sleep study soon (for gasping at night), so will follow up.
It is just awful. Been through similar. Thank goodness for the good practitioners.
Thank you so much for sharing. I have currently been undergoing tests for the past 11 months, probably ending up with a ms diagnosis. I have experienced every single one of the symptoms on your list😮
Who are those drs?! We ride at dawn! ⚔️
Im so glad you advocated for yourself! Ty for sharing
Thank you so much for your bravery and strength to record this video for awareness. Until I watched this I was unaware that symptoms often come and go so I thought that the pain that I am currently experiencing would be like this the rest of my life. I haven’t been formally diagnosed because I am waiting on my MRI but my legs are numb and painful. It hurts to walk yet it hurts more to sit too long. Anyway thank you again for helping so many with your valuable information and I will keep praying for a cure. Sending healing energy from the US 😊
Thank you so much for sharing your story! I have had numerous unexplained symptoms. I am currently in the process of trying to find answers. Thoughts & prayers for you and others going through this journey. 🙏
Hey there, you are welcome. I think the more that people share about these weird diseases the better. They are so hard to pin point and the symptoms can be so sporadic. I hope you get some answers soon so you can get some relief for anything you’re experiencing. I’ll keep you in my thoughts, love and hugs to you xx
@@mammadoo4977 Thank you. ❤️
Hello 👋 from the US !! I ran across your video and found it very informative. I have watched several MS diagnosis stories , but so far yours is very similar to mine , in not getting the help I need from doctors and also in the MS symptoms uouve had . I have had all of the symptoms you have had , with the exception of the hot patches on your legs . I have the RLS, numb finger tips and toes , electric shock bending my neck forward , creepy crawlies in a very new one lately and I have had the eyes , where my eye gets stuck
And cannot come back to center . It stays stuck for a few minutes and then rights itself . It has happened in both eyes . But my biggest , most constant symptoms is the numb finger tips and toes , migraines , dizziness and balance issues , vertigo at times and Extreme fatigue, no matter how much rest or sleep
I get . I have had my eyes examined by a specialist, I have been to a ENT and had VNG testing and then I was sent to neurology, after 5 months of appointments and testing , this May she told me she doesn’t know what’s wrong with me !!!!! I literally cried in her office !! I am glad she didn’t see a bra in tumor or something extreme but there has to be something wrong with me !!! Went back to GP and she just said well you ve had all the tests and they can’t find anything… I told her I know but something is wrong with me
!! I am a mom of 6 kids and I don’t have time to be so tired , dizzy 🥴 my kids need me … I can’t keep living like this ?! She just shrugged her shoulders and acts like it’s all in my head!!! I have become so depressed over the fact that I have had symptoms since early 2017 and still have no diagnosis!! I personally don’t know what else to do 😰😰😰 Thank you for your video , it makes
Me feel validated and like I am not alone and I am not crazy .
You know after watching you I’m going to fight my doctor to be referred!!! Bless your heart for helping me.
Finding a doctor, any doctor, who can do a competent differential diagnosis is difficult. Most listen to what the insurance will pay, do the very least amount of added diagnostic testing, and gloss over clusters of symptoms, especially intermittent clusters. It's like the medical insurance mafia have lobotomized doctors from critical thinking and observation skills! How pathetic and many doctors do not fight the system. Being the squeaky wheel is critical to your getting help.
TY for your descriptions-❤. With everything going on, likely we will see many more cases of MS. Thank God for health forums and TH-cam, sheesh.
You just shared my story! I had optic neuritis in both eyes in 2004, lumbar puncture, had the igG banding in spinal fluid, told I was high risk. Then 2019 was finally diagnosed!
Today I have a piercing right eye pain, totally exhausted, phantom gasoline smells that no one else smells! Losing my balance walking, can’t function without vyvance
❤
Thank you for this video. I share it with people I love because we have such a similar story and it allows them to hear me through you. I couldn’t articulate it better myself. I know everyone is different with symptoms but this video has been so helpful in helping me explain to my family and friends what I go through. ❤
Thank you for taking the time to tell your story. I hope you are feeling better now. I have been dx with fibromyalgia 15 years ago but now am struggling for provider to get me an mri due to changing symptoms similar to yours.
Thanks for reaching out! there are good days and bad days which I'm sure you have too with your fibromyalgia diagnosis. It always saddens me when its a struggle getting the medical profession to help, as it is their job. So many people struggle to get different diagnosis, medication and to even be taken seriously. Keep on with your fight for the MRI and any help you need, it is your right to feel well and understand if you are not feeling right. Be determined, I hope you find the right help soon! xx
I have had Fibro for over 30 years, but the last 2 years I have been having new symptoms. I used to walk for miles, but out if the blue my legs and hips started to stiffen up and I can hardly walk. I had to get a walker to help me. My doctor sent me to a neurologist who was very rough with me and had no conversation with me about my symptoms. Just gave me the nerve test in my legs. He told my doctor I have neurothapy and he didn’t want to see me again. A few months ago I woke up in the middle with severe numbness and tingling in my hands and all up my arms. It lasted about 20 hours. The arm numbness subsided, but I was left with the hand numbness and tingling. It lasted about a month, but has eased off somewhat. I also get buzzing sensations in my left arm and shooting pains in my left leg. Also totally debilitating fatigue. I have asked for a second opinion and have an appointment with another neurologist in a few months. Hope she listens to me better than the other one. Fibromyalgia is a very debilitating disease without anything else to deal with. Good luck to you. Hope you get some help. Hugs to you and everyone else dealing with these chronic pain issues. ❤️🇨🇦❤️🇨🇦
I would definitely have reported the GP and neurologist to CQC for the awful way you were dismissed, such a devastating condition should have been investigated thoroughly from the beginning and YOU should have been listened to. As for the pregnancy and the relief of symptoms I wonder if the progesterone surge you had during your pregnancy may have helped with the change. It may be worth the neurologist giving you the hormone just in case. I mean that isn’t going to do you any harm. I hope they find something that can relieve some of your terrible symptoms and more so I hope with new research they can come up with a way to stop the progression of this debilitating disease. x
I’m at exactly the same situation right now !!!!! With identical symptoms as your! I am ignored by the doctor all the time and he’s trying to tell me that I’m anxious!!! 😫 That’s flustering 😢 After this video I definitely need to see neurologist as soon is possible!!!
I'm really sorry for you and anyone else who ultimately ends up having to fight to sign out what's wrong with them while being treated like they are just crazy. I guess I got really lucky that I was able to be diagnosed extremely quickly because I fell down the stairs my legs just completely gave in on me and I had no feeling in them and they obviously knew that that wasn't something that was typical or normal and somebody who is 21 years old at the time and so they immediately referred me out to a neurologist and based off of the symptoms that I explained that I had been having MS was there first thing that they were focusing on rolling out and it was the last thing they had to rule out because that's what it was. I feel terrible though for people who feel ignored by their doctors and are left with no answers for so long That's not the way that it should be for anybody at all it's ridiculous and unacceptable.
Thank you for your video, it will be helpful for so many.
I have had a multitude of symptoms including loss of eyesight in one eye, lightheadedness, vertigo, episodes with not being able to find words or remember what my kitchen looked like, electric shocks in my bladder and limbs and My doctor did nothing so I began to research and realized I had all the symptoms of MS. So I went to him and told him that I suspect I might have MS and without doing one test he looked at me and said in a very condescending manner, "you don't have MS." We argued but he finally opted to refer me to a neurologist who instantly thought I might have MS. But I've had MRIs and they don't show lesions. So on the 12th I get to go for a spinal tap. My biggest fear is that they are not going to find anything. I need to know what is going on.
Hi there, the feeling of being in limbo and not understanding what is happening is very tough. I'm sorry your doctor was condescending, it happens to so many people and it's not okay! I'm glad you got a referral and the neurologist is willing to do an alternative test to an MRI. I understand your fear of not getting a diagnosis. Please make sure you hold onto the 'referral' process and ask questions after your spinal tap. Keep in that loop of speaking to consultants and investigate what is happening. Keep hope, there will be someone who can help you figure it all out xx
This video was extremely helpful. Thank you. It's a long journey to diagnosis.
I just came across your video, I found it really informative thank you. I've had various things go wrong over the past few years. I thought I had dementia but got through the test! I was having problems swallowing but an endoscopy was negative for any blockage. I was diagnosed with tinnitus a few years ago and Crohns disease too. More recently I drop things a lot, even light stuff, I can't undo jars etc, poor grip and stiffness. A hand xray showed mild arthritis. I went to my gp who referred me to a physio, he actually examined me more. He gave me exercises for the pain in my neck and shoulder. He noted the weakness in my right side. I have cramps in my forearms and hands. Itchy skin, crawling on my head, fatigue, dizziness, forgetfulness which gets me confused. 2 weeks ago my husband was driving us back from a concert, it was night time and all the lights were dazzling me, they weren't round or oblong they were blurred with shards of light coming from them a bit like stars. Is that a symptom?
Stars could be high blood pressure
So, so sad. I too have been dismissed by my GP , neurologist, and rheumatologist. So frustrating. Symptoms still happening- “sporadically”.
But side note…. You have beautiful skin!
Best wishes.
So very relatable. My first neurologist dismissed me. And I am kept sending to Rheumatologist just because my ANA is positive and my olicoglonal bands is not present in CNS and according to my Neurologist positive ANA indicates some autoimmune rheumatic disease. Fortunately I happened to meet a wonderful rheumatologist who went out of his medical box and due to his amazing observations and experiences in medical field; he told me that I don’t have any rheumatic issue. He is one hundred 💯 percent sure that I have MS and it is never easily diagnosed by neurophysicians. I am on my third neuro physician and hoping to not being misdiagnosed.
Great video. Thank you so much. I agree with pushing. I pushed for over 2 yrs for a Neurologist appt as I already have CRPS and Fibromyalgia but I knew these things were not part of that diagnosis and I know my own body. I had been subsequently been diagnosed with dry eyes, blurry vision, TMD and Trigeminal Nerve Pain and Ulner Nerve Pain and Carpal Tunnel. However despite Classic MS symptoms inc bladder issues, GP actually said to my face she though it was a waste of time referring me but I insisted. Fast forward and finally saw Neurologist, diagnosed not with MS but Functional Nerve Disorder, FND. Never heard of it but appears to be all the symptoms of MS but not the same cause. New to this FND, so just taking it all in.
Yes I have elements.of fnd though found out I have heds and Asperger's which linked to ms and just list my.mum to severe ms but.tbey say it isn't as if four years ago clear MRI but I have all symptoms these lady well most.
I am so sad that the doctor verbally stated that to you. I mean, we FEEL them thinking that..but to actually SAY it? My goodness! I'm so sorry. I thank you for sharing your story.
Thank you for sharing what you wheny through, right arm gets tight and my hand gets curled up for a minute or 2 and I also have brain fog all the time and my eyes also do what you are describing as well I just wanted to say thank you for sharing you gave me the stanth to go and get a diagnosis thank you keep the videos coming ❤🙏🌻
11 years in Australia, undiagnosed, saying the same things for 11 years. The ER diagnosed me after 7 days in hospital. Pretty sure you need to present like a stroke in ER to get a proper diagnosis.
Lifestyle, stress reduct, sleep, pain management, diet and exercise . vit D, B group vit. Dmts. That's it . For everything. It's Everyone's next step.
Hello ❤ I was diagnosed in 2018 with Fibromyalgia & Chronic Fatigue Syndrome/ME.
BUT…. For the past few months I’ve been getting pins and needles every morning when I wake up, in my hand, sometimes both hands.., my fatigue is pretty bad, but seems to have gotten worse. Even if I hold my phone for a certain amount of time… i get pins and needles , I also suffer with RLS, but that’s that’s getting more frequent and I get quite violent jerks in my body too. Thank you for your video, I’m now subscribed to you xx
I’m in the US and things have been very similar here. Only one neurologist in my small town and he’s an ass. Symptoms from the time I was 20, diagnosed in my late 40’s. They told me it said in my charts that they suspected MS 10 year prior. I’m guessing it also said I was a hypochondriac. Didn’t say a word to me. Think of how much progression might have been avoided. Malpractice. I’m now 68 and have progressive now. I’m doing okay due to handling my own research and dietary treatments. Best of luck.
Great video. With doctors, it's the luck of the draw. You could see someone good, you could see some useless. It's vital to be ones own advocate. If you're passive, you almost almost always get nowhere. Very best wishes to you.
You are one of the first people that I have heard say has had horrible itching!!! I keep telling my doctor I feel like I have chickenpox or mosquito bites everywhere without the signs. It’s just awful I could make myself bleed from scratching. And then numbness afterward. It’s awful!!! I have found that Calm magnesium powder helps some with the fatigue. Not fully but some.
All over the Internet I read about incessant itching, a nerve kind of itch, that isn’t relieved by scratching.
I had the same thing happen with my first neurologist, who fat shamed me and told me my leg symptoms would go away if I just lost a few pounds...it took 5 years for me to finally get the diagnosis of ms, and proper treatment....
Just came across this video, thank you and I hope everyone is doing well. Have had symptoms for years, had migraines for a long time and MRI only showed one lesion. Neurologist many years later said ‘you’re fine’ even after saying I lost 75% of hearing in left ear and ocular migraines in left eye. Trouble swallowing and restless leg…..so here I am a year later after suffering horrible blurry vision in both eyes and unable to work for a day. Eye specialist is saying glaucoma which I have a follow up in 3 weeks. Seeing neurologist again end of July. So tired of them messing around, almost everyone seems distracted and in a hurry. I agree, you need to advocate. I’m tired of people saying I’m fat, lose weight. People are very hesitant to diagnose MS until the disease progresses to permanent damage. I refused the lumbar puncture due to migraine side effect and again, not conclusive of diagnosis. So frustrating. I hope things worked out for you, thinking about all of you who have been diagnosed or those without a diagnosis still struggling.
I've seen some MS youtube videos about significant symptom improvement from a keto / Carnivore diet .(see on youtube , Anthony Chaffee M.D. , Multiple Sclerosis, ).
Most of my symptoms are pretty close to yours, the ice pick headache comes in from thebside or in my eyes, I have leg drop where my foot drags and I trip over it alot, and I have halting speech when I get really tired. Lots of water, and lots of rest help more than anything. I am still in process of diagnosis and also have EDS which has so many overlapping symptoms that I will never know what is causing any of it. But the lesions speak for themselves so.... God bless you
Thanks for commenting. I'm so sorry to hear you are experiencing these things too. You are completely right with the water and rest! Everything with me seems to get worse when I'm super tired, the speech symptoms are very annoying, especially if you're talking to someone who doesn't know about it. I end up feeling like a complete idiot. Can I ask what EDS is? Also how is your diagnosis process going? sending love and hugs x
@@mammadoo4977 disease that affects the connective tissue
Excellent information. I'm sure you are and will be very helpful to people who have some of these symptoms and can find no help. To keep pushing for help. Thank you very much.
Diagnosed 20 years ago. Thank you for sharing your story❤
Well done you for pushing for your diagnosis xx
Im 8 weeks into my first ever relapse, i still havent been diagnosed yet still waiting for my lumbar puncture results back. But it took me 6 times in a week to go to hospital up a&e and they all sent me home. Every single time. Until the 7th time i went up and they finally admitted me! These are all my first symptoms 😥
Double vision
Off-balance going to the left (walking drunk)
Vertigo
Pressure headache
Dizzy being on my left side and laying down
Eyesight jumping
Numbness in left side of mouth - still the same now.
Numbness on scalp, back of leg, bum cheeks, back.
Left arm weakness
Leg weakness
Constipation
Numb lips chin and left side of the cheek
Pain in Face on my cheek under my eye, up to my right temple
Eye twitching
Top of left arm twitching
Left leg twitching
Restless legs before bed
Loss of coordination
Muffled ears
And althroughout this, i just fount out friday that im pregnant! I have 3 boys already, aged 12, 2 and wouldve been 5 but we lost him 9 weeks early.
I have been struggling SO much. Im glad i fount your channel. Im terrified that the next relapse i have ill loose my eye sight permanently or be bed ridden not being able to look after my children. I just turned 28 in april. 2 months later im in hospital with so many symptoms.
How do you get through? How do you stay positive? Im trying but im finding it so difficult xxxx
Absolutely ezcellent video to motivate people to find answers! I needed to hear this! Thank you so much for making this video!!! 💕💖💕💖💛💖💕💖💛💕
yes i love this, i have been having symptoms for a year now, been to urgent care 4 times they just do ekg and send me home, one times said i had asthma. than they sent me to neorologist had to wait a long time because i was new patient, he did eek, emg on arms and legs, my right foot is gettin weaker and my arm gives up, he said i wasnt bad enought for mri. so this year i found a new dr, and she did brain mri it was clear but have pineal cyst, insurance denied spinal mri. i have cold rain that runs down my face,sometimes i trip on my right foot, or drag it at night, if i get hot , like hot showers or to much sun, my head goes numb and tongue and cant swallow. i get lightening things down my arms, chest soreness above left breast. i get jolts sometimes. it started as tremors at 330 am. diet has helped me so much. i am just one level one of dr wahs but vegan . its all i have , drs not have diagnosed me yet , ih ave two cousins w ms but the medical help for ms sucks.
❤
Thank you fir sharing and your encouragement to keep doing ❤️❤️❤️
Oh and I want to add that everytime I have been pregnant almost all my symptoms go away and I have more mental clarity and more energy , then when I am not pregnant. Eventually , though the symptoms would creep Back in, especially the fatigue and headaches, but then I would
Get pregnant agian and it would go away . I had my last baby May 2019, and haven’t been pregnant since and now
I have experienced way more weird neurological symptoms then ever and I just think it’s because I am not pregnant or nursing every 2 years .
I've experienced every single one of your symptoms apart from the eye one well not completely The eye once been on and off including blurry vision including blurry vision I'm positive I've got it I'm waiting to hear back from a neurologist it says that it's unlikely the relationship says it is unlikely I have it. Thanks so much for sharing ❤
So sorry you are having a tough time through diagnosis, it seems everyone struggles with autoimmune diseases getting diagnosed. I feel for you with the symptoms and not knowing, being in limbo isn't nice at all. Like with your other comment, you can suffer with MS for a long time and not know about it, it's so important to carry on with your diagnosis and asking 'what's next' to your neurologist. Understanding MS and starting to treat it early or changing lifestyle habits can really help on a day-to-day basis and for the future. I wish you the best of luck, don't give up hope x
Just checked your symptoms list and yes thats me. My symptoms are getting more and more regular. Burning sensation on my right arm for months now, same with hand weakness, pain and numbness. I struggle popping pills out the strips. I play guitar and I can only play 5 minutes if that before my left hand and fingers go numb and in pain.
Your probably already doing this but may I suggest that you keep a diary.
Thank you so much for sharing your journey
I suffer from generalized anxiety and panic disorder, chronic stress etc so I know where my symptoms come from. The best thing to do for people like me is to not read nor see anything related to this on the net. It's killing me mentally...I became hypochondriac as well...I don't say people shouldn't share or anything far from, It's just that there should be a red flag for people who are sensitive to the topic. Maybe I sound wrong or ridiculous for saying this when it comes to this subject, but people in my position have this as a problem simply because of the anxiety diagnosis. I have it since 2020. So..... -_-
I was so worked up I was tingly and slightly numb on my left jaw and my left hand also for 3 days now worried and all...pins and needles..and when I got the panic attack I told myself it my brain playing tricks on me...I have to focus that it is a panic attack In that moment and not to think about the cause of fear that triggered the attack in the first place.
And now I feel relief, no tension in muscles from the position at work i have, no constricted blood vessels that produce these physical symptoms and all that together etc..I just need a damn massage and exercise...I went trough a lot these past 3 months and I need to breathe for once...
It is awful, the waiting and waiting. But, this really shows the importance of you, as an individual, to record everything. You know it will take a long time to get any Dr or GP to take you seriously, so record everything, no matter how small. You will then see if things increase (or see a pattern etc). Go back and back and back to the GP just so you can get it on record that it's still occuring. Even if it makes you feel awful, you must go back to get things noted down. GP's, and Consultants, sadly are taught to get rid of patients.. to basically push any patient down the line. So they fob you off until it's seen that you are not going away quietly. Their hope is that if they keep telling you, nothings wrong, it's anxiety, it's cycle-related, it's age, it's being female, it's too much salt, not enough salt(yes that's been used on me for A.S), etc etc, that you get fed up and you won't come back. That is their MO. Push it further down the line. So record and badger them. It's awful that we have to advocate for ourselves... but we must. Be knowledgeable and empowered. xxx
Hello,my friend
Thank you for sharing
Always great to gather information on heath issues
Warm Wishes from Amman Jordan 🇯🇴 The Middle East
Good luck with everything. Just one thing I would say, I’m not sure ppl who are depressed and anxious necessarily always know this is the case
Thank you. Yes, I agree with you, its a difficult one. I just hope everyone can find a friend or some sort of support structure to help even if they are not aware themselves x
Hi I Rob, I went through the same thing as you with my GP. I was 46 be4 I was diagnosed with Ms. I feel for you honey. X
During pregnancy your immune system really backs off so that it is not attacking the fetus, which is essentially foreign. MS happens when your immune system attacks the myelin sheath “wiring” between neurons in the brain. With the immune system really suppressed, most patients get much better. But flare up badly within a year PP.
I’m a doctor and I’m so sorry you’ve gone through this. I was going into combined psych/neuro residency so spent about 20 weeks in MS clinic. Fascinating but I went through so many symptoms/ hypnic jerks falling asleep ( I was barely getting any sleep), twitching eyelid so badly I could not use that eye, seeing Scotomas which was diagnosed as aura without migraine. My foot had pins and needles. Have had RLS since I was maybe 5. I am 37 and had all these horrific symptoms at 34. When I’m very stressed some come back. After standing for long clinical rotations, I’d have back spasms, extreme pain and constant jerking and spasms in my ribs. It would make me curl up. But my testing always normal except for extreme hyper reflexia which I’ve had since I was 16 and they tested me bc I had back problems. I’ve fallen asleep at work and driving. I have been exhausted for 2-3 years. No amount of sleep helps. Oh I just remembered when you said it I had ice pick headaches at 22!!!! I went to PT and they diagnosed muscles compressing my nerve. I’m at a loss. I have a feeling one day I’ll be diagnosed. But I also had cancer and had my thyroid removed, so many align w that as well. Brain fog. My mom is 71 and can tell me what I did last week but I have no idea.
It’s awful; especially in our age group as females are the most common group in both areas. Also low vitamin D levels are linked to MS. Mine has been around 17 and low normal is 34. 90 is great. I just fall asleep texting.
I’m glad you’re doing relatively well!! Odd that this video just happened to pop up for me!
My optic nerve is always perfect as well, so they do not believe the Scotomas are related to MS or INO. I’ve also had strange sensations like a hair or bug is on my leg- but nothing is there. I’ve seen the best neurologists. Thorough, caring. But still…I’m written off as a hypochondriac. My legs are very weak but that can also be my thyroid meds being off. There is a symptom in forgetting but I can’t think of it. I thought I had trigeminal neuralgia but that was my mind. I’m headed to see if you’ve any updates since this vid. Best wishes ❤
You are the first one describing the heat patches. I called them fire patches, had them from 25 to about thirty years old, three head. Cat scans and two mri without contrast "ruled out" MS back then.
Still no official diagnosis for MS has been given, but I get symptoms on and off, double vision and lazy eye, field of vision coming and going, tingly hands and feet, part time I struggle finding words, speech is slow and my toungue feels like it is too slow to form the right sounds..
I.guess, I will have to talk to my neurologist again, who sees me for what is named interstitial necrotizing myopathy, which is going on in my legs, and presents itself with a higk ck blood value and pain, swelling in the calves and the feeling, movement is harder and the air is giving a resistance as if I were walking through water.
I can relate to Doctors thinking they know all the answers. I remember having knee pain and a Col in the military said she could cure me but I needed a referral and told me the doctors would give me a hard time. She was correct, the doctor said I needed surgery and I was wasting my time. I asked for referral anyway. He grudgingly gave it to me. She said I had trigger points on my leg and had me roll on a foam roller. Two weeks later I ran the Army 10 miler. My only regret is I should have gone to him and told him I was cured. 12 years later I don’t have knee pain. Doctors don’t always have the answers and some are so prideful to admit it.
I was in hospital because of bleeding in my bowel for some time. The doctor sent me home saying it was just something in my diet but he didn’t know what. Luckily I have a great doctor as I went back to her a few months later and she arranged a colonoscopy which showed up my cancer. I’ve since had an operation for my bowel and my liver as it spread. I’ve been cancer free for 1 year now but when I think about that doctor and what would have happened if I had just believed him I get a bit annoyed especially since I felt that I had wasted medical staffs time and taken up a bed that I didn’t need. Always listen to your body and don’t be fobbed off.
Thank you for this! I hope you are doing well!!
I've had a MRI of my brain and spine.. I'm struggling to walk, im numb from breasts all the way down to my toes.. a lot of spasticity in legs, groin hip and lower back. Knees hurt something awful along with so much pain at top of my back/neck.. left arm is beginning to feel the same.. just waiting on results. Been like this for 4 months and it's not getting better, slowly but steadily getting worse. I'm a mother of 2 and I'm scared!
How are you coping now??
Aww sweetheart, it sounds like you've been going through a tough time. How are you now and have they made any progress for you in finding out what's going on? I understand when things like this are happening, especially when you are a mum, it can be so very scary. It's tough to stay strong and not be scared but just know that your 2 kids love you and will help give you the motivation to find answers.
I have gone backwards a little with MS flare ups due to some infections over Christmas but slowly working my way back to some level of normality.
I am keeping my fingers crossed for you and sending lots of love and hugs your way. Please let me know how you are x
Was it ms and how are you doing now? Struggling with similar symptoms, so scared for my leg mobility :(
@@mellitys ms is lesions in the spine and brain
Im so sorry it took you so long to he taken seriously and get a diagnosis. I hafe had many of your symptoms to years now, most were just strange symptoms lole numbness and oins and needles etc in the past. Now I have pain on the one side of my body that is dibilitating. Have yoh experienced pain at all ?