Do any of you know anyone with Devics Syndrome?

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Do any of you know anyone with Devics Syndrome?

Postby Jim_P » Sun Jan 06, 2008 3:00 pm

I've been reading qutie a bit about Devics Syndrome. It is thought by some that it is a varient of Multiple Sclerosis that is very very very bad, with bad prognosis.

The reason I ask is that I have been reading that spinal lesions in MS don't usually cover more than 2 vertebrae.

It was my understanding that the lesions in Devic's cover more than two.

I am frightened to death of this. Even though it says that brain lesions are rare in Devics (and I do have 5), my spinal lesions look like one long train from my neck, down to the middle of my back.

Devics is also assosiated with optic neuritis. The main things are the spain and the optic nerves.

I've had optic neuritis a few times over this past year, the first was two decembers ago, although the first was the worst.

It is also mentioned that it is rare for spinal damage to start before the onset of optic neuritics... This kind of puts me at ease a little bit. I did have an MS hug in my abdomin before the neuritis and had a little trouble peeing.

HOWEVER, after my optic neuritis, EVERYTHING related to my spine got entirely worse. Shortly after the optic neuritis started, a couple months later I have to squat to pee....my ms hug entirely covers my abdomin, numbness of my body became severe and within that time, the trouble walking began.

Please tell me others have experienced what I have, because I can't handle a death warrent from Devic's . It is a potentially fatal disease and is much more rapid than most forms of MS. :cry: :cry: :cry: :cry:
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Postby Loobie » Mon Jan 07, 2008 4:13 am

I was actually diagnosed with Devic's for a while until my brain lesions started going up in count. There is a blood test from the Mayo that you can take. There is tons of information on myelitis.org and there is a forum just like this one called Gayle's place. I forget the web address, but I know if you google Gayle's place it will come up. It is from the UK and the people on there are great. You are right, it is not a fun disease by all accounts. The people on there wouldn't just get steroids from a flare up, they would do plasmapheresis and things like that. It can apparently be very malignant, but it also seems to have more cases of a CIS type of thing; you know the one time and you are stuck with damage, but done having attacks. Neuro Myelitis Optica is the term (Transverse Myelitis + Optic Neuritis) and a google search on that will also get you plenty of information.
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Postby art » Fri Jan 11, 2008 10:23 am

A good place to learn much more about Devic's is
http://www.myelitis.org
Art Mellor Dx 2000
You can see what we have to offer at
http://www.acceleratedcure.org/offerings/
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