Devics disease

Lars · Post by **Lars** » Tue Apr 08, 2008 3:31 pm

I assume this subject has come up before but I thought it may be worth a re-visit. More than a few in my local MS chapter have been re-diagnosed with Devics and not MS. I had never even heard of this disease before. The Mayo clinic seems to be the front-runner in diagnosis and treatment of Devics. It may be worth some investigation for a lot of "diagnosed as MS" patients.
Lars

Lyon · Post by **Lyon** » Tue Apr 08, 2008 3:55 pm

Lars · Post by **Lars** » Tue Apr 08, 2008 4:59 pm

Bob,
According to accounts of those I know, the lack of brain lesions seems to be a reason to question a MS diagnosis.
Lars

Lyon · Post by **Lyon** » Tue Apr 08, 2008 6:24 pm

Loobie · Post by **Loobie** » Wed Apr 09, 2008 9:43 am

I was diagnosed with Devic's for almost two years. I had spinal and Optic nerve lesions and nothing on the brain (or in it depending on who you ask). It can be a nasty disease with horrible relapses and can be fatal by affecting the area of your spine where your involuntaries like respiration are controlled. There is a great page like this for people with NMO called Gayle's place. I think the address is http://devic.co.uk.

If you can believe it, I was almost relieved when my dx was changed to MS since Devic's can be so serious. It's apparently very prevelant in Asia where they call is OSMS or Optico-Spinal MS. From what I recall, it can attack the entire myelin sheath that surrounds your spinal cord and the lesions can be very long and thin when it's like that.

You are correct that Mayo is the trusted test. We were all set for me to take it (we had to think about it since it 'ain't cheap) right when my dx got changed. It's basically Transverse Myelitis and Optic Neuritis, thus the NMO moniker (Neuro-myelitis optica). The only "positive" thing I remember reading about it is there are more CIS events with Devic's than with MS. They use different techiques for relapses as well. There were many on the Gayle's place board who had undergone plasmapheresis and also IVIG. So devic.co.uk and also myelitis.org are the two best resources for info. that I found.

Lew

Lyon · Post by **Lyon** » Wed Apr 09, 2008 10:35 am

Lars · Post by **Lars** » Wed Apr 09, 2008 1:39 pm

Thanks for the info guys, I will pass it on to my friends although I'm sure they are knee deep in research at this point. By the way, this was not a concern for me personally, I have enough brain lesions to make a connect the dots masterpiece.
Lars

LiquidSkin · Post by **LiquidSkin** » Thu Apr 10, 2008 12:49 am

when I got a second opinion, he first though I had Devics Disease instead of MS. The reasoning he gave me, was because I had one long lesion on the spine and no brain lesions. There is a test for it, it just came out about 3-4 years back he said.