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Re: MS & Devic's syndrome

Re: MS & Devic's syndrome

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Posted by Louella Pipher on November 17, 2000 at 23:47:09:

In Reply to: Re: MS & Devic's syndrome posted by Ted Froberg on August 27, 2000 at 12:48:23:

: : : : : 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!

: : I just recently was diagnosed with Devic's, the docs have played with me for years in trying to get a diagnosis. Now I am told that I have MS but that is the least of my worries, I have Devic's and need to be treated aggressively. I have already lost a lot of the use of my legs.
: : I would love to hear more from you both, I start on methotrexate on August 29. I understand that this is the best treatment, I don't know, at this point, I would drink snake oil if necessary.

: My wife, Heather, was diagnosed with MS in 1994. She and I visited Mayo Clinic in Rochester, MN in May, 2000, where she was seen by what we consider two of the finest neurologists in the country, if not the world. They diagnosed her with Devic's. Here is what we were told: There are probably fewer than 5,000 cases of Devic's worldwide, including those who are now improperly diagnosed with MS. There is much debate in the neurology field as to whether Devic's is a separate clinical entity, or a "form" of Multiple Sclerosis. The largest study done on Devic's to date was performed at Mayo on 71 patients seen since the 1950s by the neurologists who examined my wife. That study concluded that Devic's is a separate disease. The typical MS drugs (Avonex, Betaseron and Copaxone) have no effect on Devic's patients. (We found that to be the case) The only drug recommended by the Mayo neurologists for Devic's is Immuran, an immuno-suppressant. 50% of Devic's patients experience tonic spasms. (my wife, Heather, is among them and takes Tegretol to control the spasms). Less than 5% of MS patients experience tonic spasms. Devic's patients do not show an abnormal brain MRI, but experience lesions in the spinal cord (longer than two vertibrae) and optic nerve.

: Please
: email me if you have further information.

: Ted Froberg, tfroberg@aol.com hi..my internist mentioned this syndrome to me...had a hard time finding infor...and still limited @ that..can u forward any to me /....I have ms...for 25 yrs....good/bad days...but have a positive outlook most days...please e-mail if u wish...




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