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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
The tiny percentage who do have devic's, it's a very real cause for concern, although I'm convinced it's a variation of MS and will respond to "effective" treatments (not the worthless crap available now).
Everyone has the right to scare the shit out of themselves for no logical reason by worrying whether they really have devic's.....but I'm not sure why they would.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Tue Apr 08, 2008 8:24 pm Post subject:
Hi Lars,
As you mentioned earlier, the Mayo researchers set up a complete set of diagnosing guidelines so that we don't have to rely on one factor.
If you were forced to pick one factor, with it in mind that "something" is always closer to conclusive than the "lack of something" (quite a few people have symptoms and increasing symptoms with no brain lesions and don't have devic's) probably spinal lesions longer than three vertebrae is more damning, but still not conclusive in itself.
Lars wrote:
According to accounts of those I know, the lack of brain lesions seems to be a reason to question a MS diagnosis.
Not that what you're saying isn't true but devic's isn't common isn't a serious consideration regardless of whether or not mri shows lesions.
"Maybe" straying from devic's a little, mri not showing lesions is kind of an important consideration. In the same light that "neurodegeneration "without" inflammation" is probably hogwash, likely so is symptoms in the absence of lesions. The mri machines commonly in use are a vast improvement over guessing, but they don't show inflammation well and the new higher definition mri's make obvious that the currently used mri machines aren't very discerning when it comes to lesions. Symptoms in the absence of lesions, in most cases when using a higher resolution machine, would be symptoms with visible lesions. _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Sep 12, 2006 Posts: 865 Location: Dayton, Ohio USA
Posted: Wed Apr 09, 2008 11:43 am Post subject:
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 _________________ "When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Wed Apr 09, 2008 12:35 pm Post subject:
Loobie wrote:
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.
Although I've had a couple of research neurologists differ with me, recent articles I've read caused me to wonder if MS is presented as devic's in previously MS "virgin" populations and that MS becomes more widespread and less aggressive in a given population with the passing of time.
It seems the populations which are now experiencing MS, which previously had been considered not to have the "genetic predisposition" are most affected by devic's....minorities in "developed" countries (American Indians, blacks, orientals) and recently economically enabled populations in undeveloped countries.....ie: "developing" populations.
Sadly I can't find some of the articles I read when I first started looking into MS which seemed to show that MS was more aggressive and more optically oriented in the early days of MS incidence in the US (when the US was a "developing" country).
Just another interesting aspect, but if a convincing argument were made it would further impress the relationship of environment in MS incidence, because genetics couldn't be responsible for that degree of change in that amount of time.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Mar 22, 2007 Posts: 273 Location: Durango, Co
Posted: Wed Apr 09, 2008 3:39 pm Post subject:
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
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.
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