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
erika33708 carolinagirl1
Posted
I'm not sure if you are still on this discussion but I wanted to let you know the same thing happened to me. I was diagnosed in 2003 then told in 2013 that it was a misdiagnosis. I spend about 7 years on different medication that I didn't really need to take. I was wondering if you would like to talk about it in more detail.
hope4cure carolinagirl1
Posted
misdiagnosis is a difficult adjustment. Have you talked with an attorney. I would at least ck out the options. Not only take pmt once he case is only done or if a settlement is agreed out of court. Negotiations can be a started anytime. With all that you have been hurt from a misdiagnosis is unacceptable and negligence.
It must be so frustrating that no one can send you on to a dr to give u a diagnosis.
I had vit B complex B6, B12 defficency. I had a lot of similar issues u described. Have your vit B levels been checked vit D. These vit are closely relate to the symptoms described.,As we age we have a more difficult time for our systems to produce certain vitamins and minerals. I even had tingling in my legs and feet. Many of my my pains were like RLS and were from taking antihistamines. As well as hip implants. I take the vitamins I was deficient in as well as I stay with a exercise program the therapist designed for my needs and eat a better diet also antiinflammatory foods. Protien shakes help with energy and keep my weight down .
Take care. I hope you can get this sorted out soon.
wendy80842 hope4cure
Posted
Definitely only take vitamins once it's cleared by a dr, it is possible to overdose on them, which can have (potentially serious) repercussions on your health.
Misssy2 carolinagirl1
Posted
My sister has MS....and she told me she has one of the best Drs in the state and that he said the only way (most telling way) to know if a person has MS is from the spinal "tap".
Hers was not clear and was a white chalky substance (probably those bands that are mentioned by another response you received)....and he diagnosed her with MS.
wendy80842 Misssy2
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Misssy2 wendy80842
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But, I have an apt with the current Neuro Monday and I will talk to her about it. Thank you...for your response.
wendy80842 Misssy2
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Take care
dani07889 wendy80842
Posted
Hi Wendy I hope you will get this as its been sometime. I was surprised by some negativity on here from some. I certainly don't want MS but having a clear answer after 10 yrs would bring comfort. Was happy to read your information. I have been literally hospitalized 4 times in treatment of MS. However my MRI is missing a 'lesson ' and my tap was inconclusive. Have been diagnosed ,undiagnosed four or five times and given 'probable ' MS. I saw a top Nero at OSU 2015 while being hospitalized who said absolutely I did again until MRI at which he at time had nothing to compare to. So if i was in flareup wouldn't a new lesson appear?
I hate how callous one seems ' be happy you dont' imagine feeling crazy, your body is cheating, betraying, even your mind infact most with MS might of felt this way at someway at a point. Those of us in limbo still do but not knowing if this will continue on forever. I worry bc I have permanent damage to my sensory that if nothing is ever diagnosied my body will receive more damage. I greatly appreciate. What you said. Thank you
hope4cure Misssy2
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eva10587 carolinagirl1
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I would not accept the undiagnosis thing if you still have issues and they cannot tell you exactly what you do have!!!! Run don't walk away from the quacks of the world!
Spinal tap can be clear and still have ms! No one test individually can eliminate ms as a possibility!
By removing the diagnosis, the doctor can then milk your insurance and you for unlimited tests and procedures to attempt to diagnose you!!!
Can you still contact previous neurologists and doctors that you have seen that are familiar with your issues?? Perhaps they can suggest a better doctor to treat you or can at least contact the one that is trying to say you do not have ms. Seek out help from wherever you can,maybe the ms society?
Fjordhorselover eva10587
Posted
Re: milking insurance. I agree. The other side of that coin, related, is not having insurance! The buggers won't do any sort of testing despite my symptoms because I don't have insurance and am on a University's assistance program. The "doctor " even had the gall to say, if there were unlimited funds available... and when I called him on that started back pedaling so fast I am surprised he didn't fall out of his chair! I am suffering and cannot get ANY help.
karen42369 Fjordhorselover
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3 years ago I was told I do not have MS after having been diagnosed and treated for it for over 20 years. My insurance decided they did not want to pay for my Avonex and switch me to the generic version of Betaseron. I had been on Betaseron in the past and has severe reactions to it. Once I appealed to get Avonex, they did another MRI and decided I do not have MS. Mixed emotions. Glad I do not continue to inject myself with interferon, confused at to what all my symptom are related to and p****d that we made sure not to have a third child after I was diagnosed. I have gone to other kinds of Dr.'s and now the issues I have had since my 20's are age related. I get neuromuscular massages and continue on baclefen. Now my primary Dr. wants me to go to a neurologist since the old one retired. What evert I have, it is not fatal so I am not getting any further testing done. My insurance has changed and I now have a high deductible. Good luck.
lesliec1971 carolinagirl1
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I was just told the same thing after going to another MS specialist. He thinks I have Sjögren's syndrome and that the symptoms mimic ms. Speak to a good rheumatologist. All the best and blessings.
jadon26726 carolinagirl1
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snotty carolinagirl1
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snotty
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Do what ever treatments you need to do or that work for you to keep yourself as healthy as you can. But if you do have ms you may wanna change the treatments up every few years whether they are dr prescribed or natural as eventually your body will become immune to the treatment no matter what it is. It's sad but that's what happens.