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-   -   Ms & on? (https://www.neurotalk.org/occipital-neuralgia-and-other-cranial-neuralgias/113395-ms.html)

prairiegirl 01-29-2010 05:05 PM

Ms & on?
 
Is anyone on the board diagnosed with MS AND On? I am currently what they are considering a "one of" case and I would like to know if anyone else has a similar dx. Surely I can't be the only MS patient with ON!

If you do have MS, I would like to know if yours is confined to spinal cord lesions like mine is or not and what types of treatments you have tried or are using.

Please and thank you!

tante 07-19-2010 10:14 AM

Quote:

Originally Posted by prairiegirl (Post 615814)
Is anyone on the board diagnosed with MS AND On? I am currently what they are considering a "one of" case and I would like to know if anyone else has a similar dx. Surely I can't be the only MS patient with ON!

If you do have MS, I would like to know if yours is confined to spinal cord lesions like mine is or not and what types of treatments you have tried or are using.

Please and thank you!

Many, many months after your post, it appears as though I too, have both. MS is a known factor for me; this type of ON, v my other Optic N, is looking more and more likely. The combo does show up via GOOGLE, and makes sense unfortunately, as none of the other cranial "algias" are left unrepresented in MS.

Lesions? At this point I don't even know if I have spinal ones, once appropriate and numerous cranial ones were found no one looked further...fine with me till I live elsewhere.

I was first on Rebif, and although I liked it, I had fixed site reactions (allergic) with which the Dr. was uncomfortable so I was switched to Copaxone which was a NIGHTMARE to the umpteenth degree. My Dr.pulled quite a few off of C over a several month period then, and there was a rash of folks over on the MS World board complaining of less typical problems also....bad batches maybe?
Anyway I can't have Tysabri, and am unwilling to use any chemo based pills so I am sticking with LDN and Sx treatment like provigil, baclofen, etc.

Please, do not take my feelings about oral drugs as advice to you, they are specific to me, my age, and my general health; I am a senior, you are not....the scales (and risks) balance differently for all of us and given the years left ahead of you, you might feel very differently than do I.

Take care

tante


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