Misdiagnosed after 10 years!!
Posted , 31 users are following.
I was diagnosed with MS in 2005. Now im being told I DO NOT have MS . My neurologist I had for 6 years left the practice, I was turned over to another neurologist within the same office and he says I don't have it. I was shocked, got a second opinion and he's saying the same thing! He says my MS lesions dont look lije MS lesions and I dont have enough neurological findings. This has been a nightmare. I have so many MS symptoms, . Ive seen 3 other specialty doctors, a vascular doctor, a spine doctor and a neurosurgeon that checked me for Chiari Malformation and all 3 cant find anything wrong in that area. Has anyone else had this happen to them ??? Im in USA and im hearing and reading things thst say that people are being misdiagnosed with MS, but then they cant tell me what I do hsve. My main symptoms are chronic fatigue, PAIN in my legs, feet and ankles, very sensitive to heat, much cognitive changes. and spasticity. I have 11 lesions and a clear spinal tsp. Any thoughts?
6 likes, 67 replies
Jeanie360 carolinagirl1
Posted
I was just told yesterday after about 5 years on treatment (which has messed with my immune system and disfigured me - reactions to the shots; nothing dramatic but enough to bother me) that I do NOT have MS! I too still overheat, feel like crap and have all symptoms, but the same Doc who dx'd me said FMS (Fibromyalgia) mimics thoee same symptoms. I still had bands, though and either 2 or 10 lesions. I thought at first it was ten but may've misheard. Anyway, last MRI showed only this. Four months later, only 1! It is so confusing and kind of traumatic to find after coming to terms with thinking I had it, that now I don't. I mean, its good! I do have thyroid problems. Could it be that? I'm also pretty anemic. Like from kidney failure. Not dialysis level but enough to supress the hormone that tells the bone marrow to create RBC's. (The kidney gives out those hormones). I'm sorry for what you're dealing with!
lotta62375 Jeanie360
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I been having some 2 or 3 symptoms . I am very scared. I don't know what to believe anymore about this MS. I been reading quite of it on this disease. I am puzzled to find that many people mention vitamin D deficiency and hypothyroidism as other ailments that they have. I also have those 2. I am glad to hear you don't have it. If you dont mind how old are you? How you feel now?
p26743 Jeanie360
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I am in a similar sitution and it so frustrating and angering!
I was diagnosed (after 1 spot in spinal cord, then another in my frontal lobe) in 2013. I started treatment and was on this for 3 years. Nothing was showing up at all over this time, and i stopped treatment (as advised by my neuro). I sought the opinion of a 2nd neuro and he informed me the second spot was a scan error (boy was a i mad). It has been a year, and i have spent this time thinking i do not have MS, and i just had one bought of transverse myelitis and the second spot was an "error". I had a scan just recently and that "error" spot has shown back up in the recent scan - hard to believe an error has happened twice!!! I have 2 neuros and will see what the other one says next week! i asked the current one point blank after all this stuffing around, DO I HAVE MS? he said "a grumbling benign MS - I dont believe that is even a thing!! Ah, its so frustrating at being on those drugs for years and causing other potential problems, along with liver damage and now all this mixed information. Cant believe getting a diagnosis is so hard - especially after reading all these comments on this forum. Grrrrrrrrrrrrr
lotta62375 carolinagirl1
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I am glad you don't have MS either. I just found this forum. I like it very much. I just don't know if you are still participating ......hard to tell . If you are I have many questions for you.
db1130 carolinagirl1
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I'm surprised they haved told you you have fibromyalgia yet! I feel like that's what they say if they can't figure out what's wrong with you! I'm currently being tested for ms and lupus. I too have lesions on my brain my myelin sheath is damaged, i have pins and needles in my hands and feet. Pain in muscles and joints I'm 38 and feel like I'm80 years old. For the past 15 months since I've given birth to my daughter my eyesight has been crazy. I see colors that aren't there, floaters. Ive been told it's a silent migraine, but for 15 months? Plus i still have episodes of regular migraines ( the painful ones) I've been told i have chronic migraines with fibromyalgia... Last i checked peeing your pants is not a symptom of fibromyalgia. And all the research I've done nothing says migraines cause damage to the myelin sheath.
SusanAUSA carolinagirl1
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Wow That stinks, have you reached out to the National MS organization to see if they have any experience with this problem. And second I would recommend that you go outside of your medical area for a third opinion. I say this because I am in the middle of a cluster of misdiagnosis right now. True example Cancer related. Went to er bladder pain. 1 ER Dr so sorry you have Pancreatic cancer and your going to die. That is a direct quote. 2nd Dr Oncologist several test a biopsy, You have PC we can give you cemo to easy your pain, we can't operate. We would like 2nd opinion, another oncologist another town over, you have PC only thing to do is have the cemo. Nope this just doesn't feel right the numbers don't match, and did I just hear you say you're best guess? Nope . 3rd Opinion PC specialist hospital, No you don't have PC you have gynecological cancer. The cemo meds are not the same. Sorry rambling but the point is take your medical history else where, And when you get your answer. Take yourself straight to a good malfeasance /malpractice lawyer and make sure they never do this to another person. I hoped I have helped.
jeralyn31046 carolinagirl1
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fiona14691 jeralyn31046
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jeralyn31046 fiona14691
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Vestibular issues are either from the inner ear or the brain stem/cerebellum...back of head. Hard to tell sometimes and vision can help you control and visual info can confuse it.
Some folks like me have both.
I have always fallen since I started walking and threw up a lot it was many years later that I started losing hearing. By age 12 I had a severe hearing loss in one ear and got hearing aids. I could never walk a balance beam or balance to ride a bike. I had episode of spinning...true vertigo...most of my life. At age 20 I had surgery they were thinking I had Menieres Syndrome or Disease. They were planning to insert a shunt to correct inner ear canals which are filled with fluid. However they discovered that mine were deformed and likely had been since birth but were able to reconstruct some tissue and block holes that had been leaking. This did help a lot. However..I never recovered balance. or hearing. And it was starting in the other ear.
I then got hearing aids in both ears. More testing where they suspended me in a harnass and measured my movements when tilted revealed that one side of my body was slow or did not react properly and then the neurology evals revealed MS likely. They said some of these issues were from Ataxia...the way I walked with gait issues was a lesion of tumor in my cerebellum (back of head). I was glad it was not a tumor.
Just prior to this I had Optic Neuritis in the eye on that same side R eye.
It left me with double vision in that eye so if I saw carnival rides of quick movements I got dizzy and nauseous. Movements as I walked and drove like a flickering form a picket fence did the same....still does. Vision was making it worse. However I did Vision training with slow controlled movements of my head and eyes and it help a lot. I have near deafness in R ear and double vision in R eye and right side of my body had slow and abnormal reactions.....matches the 7 lesions I had then and still have on the abnormal MRI.... but lesions are now differentiated by doctors and mine are not be demylenation such as in MS...cause unknown. At 20 til 50 I looked different with glasses, hearing aids and gait issues but at 66 I look like others my age.. I walk without braces on ankles/lower leg and use a cane occasionally. I developed issues with bladder in my 30s and difficulty swallowing. Do you have motion sickness? Hearing loss? Spinning sensations or irregular walking and gait?
Do you have one foot balance on both sides. These issues if they exist should be evaluated.
Hope this helps.
fiona14691 jeralyn31046
Posted
not sure what you mean by motion isckness tings just bounce up and down. i have odd feeling in my right foot and leg not sure if this is neuro or the samll break i had in a few years ago mos tlikey caused by the neuro. I certainly don't wakl corectly and have been the butt of many a joke for years. Bladder can be a problem but i put that dwon to fibroids. im not usre if the bowels is down to a gluten problem or the neuro one i cut out bre4ad and it seemedf to be a bit better. this is so odd if i stretch the wrong way my bowel wil move and i need to go that minute. today i sat down and instantly i need to go most GP's think im nuts. Last week i opened a door wiht my left hand and ened up on the floor. this was caught on a web cam you would have thought my familywould have been concerned not one bit
regina57742 carolinagirl1
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When my daughter message me your story I was reading my story. I go tomorrow to find out from the second opinion. I have been so upset about this and confused and depressed just about every emotion. I don't know what to think. How can this be and how this be happening to me again. Need help.
jeralyn31046 regina57742
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I have decided i have MS til thsy rediagnose some thing else. One Dr thinks i have a form auto immune disorder or peripheral neuropathy....the other does not. I am trying to think positive and listen to my body. I am not doubting me. They dont know. Take care and keep in touch.
jeralyn31046 carolinagirl1
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I hear you and have decided that i have an unknown variation of MS.....until they identify what i do have. I stopped the MS meds and some older symptoms have returned, but mild. It has been over 3 months. They agree i have a. Auto immune disorder...one thinks it is "some type ofperiperal neuritus", the other does not. I am not convinced eithet way. I am trying to think positive and listen to my body. I had optic neuritis abd have bision and hearing and vestibular issues as well as bladder and swallowing problems that i take meds for. I wish you the very best. We are not alone, keep in touch. Jeri
pat40985 carolinagirl1
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For 7 years I struggled to find a name for what was going on with my body, finally in 2013 my MRI lit up like a Christmas tree (as my neurologist put it). I've been treated for MS for 4 years now, and recently was hospitalized for MS exasperation and did IV steroids every 6 hrs for 4 and 1/2 days. They did another lumbar puncture and it didn't show the bands that they use to confirm it's MS. So now I'm being told that I don't have MS. I'm mad and go to see my neurologist on Monday. Stress does a number on me, and I plan to unload on him. Copaxone then aubagio seemed to maintain me until 3 wks ago when I started dragging my left leg. So, yeah, I get you. I cant deal with the headache of going through what I went through from 2006 to 2013. I have 2 parents with heart conditions and brother with psychiatric disorders that I help and that's a lot of stress, and now this. It's enough to drive me mad. I'm in USA.
patricia86145 carolinagirl1
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Hi, I am going through the same thing as you. My latest Neurologist said I didn't have MS, I sought a 2nd opinion and that Dr said the same. Last week I went to the Mayo Clinic in Rochester, MN and was told I don't have MS. I too am struggling with this news. I was diagnosed in 2003-2005. Conative issues are my worst thing, legs cramps, spasticity. I was told b these experts that because my symptom didn't lat for any length of time that they didn't count. I have over 48 lesions in my brain and at 1st was told the lesions were consistent with MS, now they are gone! The dr had changed my drugs to less often frequency(from every 4 weeks to every 6) and at the 6 week mark I couldn't walk very well. So my question is, what now? I do have fibromyalgia, that was what was 1st diagnosis way back in the late 1990's, time will tell. Trying to wrap my brain around the whole thing. I live in the USA.
jeralyn31046 patricia86145
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Crazy for sure it could just be a fad. They now call me congenital peripheral neuropathy. In my teens they suspected a brain tumor, so glad that was never true. Neuropathy is a basket for we don't know.
It does not explain my swallowing and bladder issues. I was diagnosed with menieres first. It is an inner ear immune system disorder. With vertigo and hearing loss. I have worn 2 hearing aids since a child. But when i went ofc the MS drug the vertigo and nausea have returned. Bummer!
I feel in limbo... and try to be optimistic but it is weird to get this sudden change.
lauri99725 patricia86145
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i was told I also did not have ms because the blood test did not return the finding. I was told I had periphail neuropathy.
Today I was diagnosed with Lupus also from a blood test.
HOWEVER, Side Effects from ms and lupus mimic symptoms from Lamictal XR.
I will now go to an arthritis dr to confirm or deny the lupus.
My money though is on Lamictal side effects.