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Re: MS & Devic's syndrome

Re: MS & Devic's syndrome

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Posted by Julia on June 29, 2000 at 21:19:28:

In Reply to: Re: MS & Devic's syndrome posted by Jonathan on April 11, 2000 at 13:10:42:

: : My neurologist has put me into the probable ms catagory. he has also mentioned something called
: : Devic's syndrome (neuromyelitis optica). This affects the optic nerve and spinal cord. Help, has anyone
: : heard of this.

: I am new to this board, but also was recently diagnosed with Devic's. I don't think the diagnosis is final, from what I have read, it may require further testing (I asked my neuro about yet another MRI and a 2nd spinal tap). My neuro is among the best in the SF Bay Area, but did not know a lot about treating Devic's. She referred to two other experts she knew who recommended corticosteroids with a "steroid sparing agent." For the agent she is recomjmending methotrexate, which is mentioned elsewhere on these boards. I am mulling over this course of treatment.

: She also faxed me an article which is somewhat informative. It is written somewhat in medicalese but can be read reasonably by a layperson. It is called "Neuromyelitis Optica (Devic's Disease) and its Relationship to MS" in the International MS Journal, Vol. 6, No. 3. The authors are Pambakian, Akdal, and Kennard. Be prepared for a shocker in this article. It states a 35-50% mortality rate for Devic's, without stating a timeframe or anything. Aside from being sloppy science, it is difficult for someone like me or you to read. I am looking into this also.

: Please e-mail me. I'd love to trade notes with you. We can both get through this.

Jonathan, My mother has ms and was recently diagnosed with possible devic's disease if u could e-mail me any info about it i would greatly appreciate it.... I can't seem to find out anything about it..... I hope this message finds u well... God Bless and please e-mail me thanks!

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