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Symptoms for over 30 years - MS?

I've had undiagnosed symptoms for over 30 years. I am still not able to get a diagnosis even after 5 days in the hospital last month and further testing.

The symptoms began about the time that I was diagnosed with sarcoid. I began having attacks where I would fall to the ground but not lose consciousness. Sarcoid was ruled out as the cause.
The symptoms abated after two years and a long course of steroids. But I've had several flare ups that include;
difficulty walking - my whole right side tenses up and sometimes becomes spastic or just drags. Coupled with extreme weakness.

For a month I've been mostly unable to walk without help, I need a wheel chair to go out anywhere because my legs give out, and I'm so exhausted that I hardly function. All activities are on hold. I was hospitalized from the hospital with no diagnosis.

I've been told this could be MS, but all my tests come back normal. I also have aching muscles that twitch.
Could this be MS?  I'm wondering where to go to get help.I've seen several neurologists.
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667078 tn?1316000935
Are any the neurologists MS Specialist.? Are any of the neurologists following you over time? Have you had MRIs or a lumbar puncture? If you had had MS for that long I  would think it  would show up on a MRI or LP. I had had MS over40 years when I was diagnosed. All the tests showed MS and that I had had it a long time.

If it MS a neurologist might want to follow you over time to see cahnges for himself. Mine watched me for two years.

Alex
Helpful - 0
Avatar universal
I have lesions found on MRI, but they don't show as enhanced with dye.
I'm looking for a neurologist who specializes in MS if even just to finally get it ruled out. It seems like very OTHER diagnosis has been ruled out.
Helpful - 0
667078 tn?1316000935
A MS Specialist is the best move,

Alex
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Avatar universal
Hi. You don't need enhancing lesions for an MS diagnosis. If your doctor has said otherwise, then you definitely should find an MS specialist and ditch this incompetent one.

Only new lesions (30-40 days old) will enhance. This info is useful just to show whether you have both old and new lesions, as this will satisfy the criterion of dissemination in time.

Speaking for myself, my brain is full of lesions and I've had many MRIs, yet never has a lesion enhance, and I have definite MS. That's mainly due to the happenstance of the timing of the MRIs, and doesn't mean anything otherwise.

ess
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Avatar universal
I meant to say that new lesions are up to 30 to 40 days old, not between these numbers.
Helpful - 0
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