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NMO / Devic ?!

PostPosted: Sun Apr 26, 2009 9:25 am
by Sandrine
Hi,

my younger sister and me were both dx with MS in 2006.

I'm confused at the moment: Some weeks ago my sister went to a hospital to see another neuro bcause her doctor thinks about switching her to tysabri (at the moment she is on Rebif44) - she had 7 excerbations within 1 year and at least 7 new lesions in the spinal cord... Now she has sometimes troubles walking.

The doctor in the hospital started to talk about devic syndrome / NMO, because the MRI of my sister's brain is nearly (!) clear. And she had only ONs and sensory symptons resulting from the spine - he said... He didn't do the blood test for it because he wanted to talk to some collegues first (nice! scare her to death and than nothing happens!).

Okay, Devic is restricted to optic nerve and spinal cord - BUT (my thoughts):

1: she had sensory symptoms in the face (which result from the trigeminus nerve?)
2: I have lesions in the brain stem, isn't it unlikely that I have MS and she has Devic? We had the same onset. in 2006..
3: we are no asians.
4: there are lesions in her brain MRI, but very small ones and they never enhanced with Gadolinium.

What do you think? Isn't it unlikely that one of us two has devic syndrome? Or both?

Sandrine

PostPosted: Sun Apr 26, 2009 1:33 pm
by peekaboo
New Antibody Marker Aids in Diagnosis of Neuromyelitis Optica
A team of Mayo Clinic scientists led by Dr. Vanda Lennon recently reported the discovery of a protein targeted by an antibody that distinguishes neuromyelitis optica (NMO, also known as Devic's disease) from more common forms of multiple sclerosis (MS) that are generally less severe. (See publications below.) The antibody is proving to be a valuable blood test for establishing the diagnosis of NMO and related diseases in the early symptom stage. This distinction is important because optimal treatments differ for NMO and MS.

hello sandrine - according to the above the only way to tell the difference between MS & Devic's is to have the serum test.

In my family, many of us have/had different auto-immune deseases. from MS, parkenson, graves, chrones, fibro and sarchoid. could there be a gene that is autoimmune that doesn't target specific desease? I've also heard of family members with siblings haveing MS only.

You and your sister stay strong and hang in there :)

PostPosted: Sun Apr 26, 2009 3:24 pm
by Lyon
Hi Sandrine,
Sadly, as you've noticed, nothing is certain when it comes to MS.

No one can blame you for not understanding the situation affecting you and your sister because the smartest "expert" doesn't understand the situation.

The odds are against you and your sister having Devic's.
The odds are against you and your sister having MS and the odds are against one of you having MS and the other having Devic's.

Without a doubt there is some valid reason for these family clusters over and above mere chance, but until the reasons are identified we are going to remain mystified.

I'm sorry that you and your sister have to endure this situation.

You mention that you're not asians ( :lol: thank you!) but another weird question, did you spend your puberty in East or West Germany?
Bob

Differential Dx of MS

PostPosted: Sun Apr 26, 2009 3:26 pm
by Shayk
Sandrine

I really don't have a clue about the questions you asked but there's lots of info in this article (open access) re: differential diagnosis of MS. It has info on ON and NMO.

Differential diagnosis of suspected multiple sclerosis: a consensus approach

Maybe it'll help sort it out...but then again....maybe not.

Sharon

PostPosted: Sun Apr 26, 2009 3:34 pm
by Lyon
Not everyone picks up on the fact that there is a link to the full free article Sharon, so I'm adding this link http://msj.sagepub.com/cgi/reprint/14/9/1157

PostPosted: Mon Apr 27, 2009 3:06 am
by Sandrine
Just a very short answer (I'm at work): West Germany, south and than north. why?

Thank you!!
Sandrine

PostPosted: Mon Apr 27, 2009 5:29 am
by Lyon
Sandrine wrote:Just a very short answer (I'm at work): West Germany, south and than north. why?

Sorry, everyone here has their own pet theory of what led to the increased incidence of MS in modern society and I'm one who believes in the hygiene hypothesis.

Additionally, it seems the evidence shows that the first generations meeting MS succeptibility criteria experience more agressive and optically oriented MS, hence the recent perception (mis-conception) that blacks/asians/american indians are genetically predisposed to more virulent versions of MS.

In fact, I'm convinced that I read earlier articles telling that in the early 20th century MS was more often optically oriented and aggressive in American whites, although Dr Kurtzke tells me he doesn't remember that being the case.

To get to the point, with the elimination of the Berlin wall recently it's hopeful that the East German population has begun to experience similar wealth to the rest of Germany, but according to the hygiene hypothesis, at some point in the near future we're going to see a drastic rise in allergies, asthma and autoimmune diseases also in that population...in essence the "MS map of geographic incidence" will add another degree of fuzziness in adding East Germany to the areas of higher incidence http://www.pbs.org/wgbh/evolution/libra ... 04_07.html You might wonder what an article about allergy and asthma incidence has to do with MS but by leaps and bounds it's proving out that allergies/asthma/autoimmune diseases/autisms and some cancers drastically increased incidence at the same times/places/conditions and that they continue to be unheard of or rare in vast areas of the world today.

What we all need to be wondering is "why do I need to be saddled with MS when vast areas of the world don't experience it?" and "why don't vast areas of the world experience MS so that we in the "developed populations" can adapt that aspect?"

Bob

PostPosted: Sat Jul 18, 2009 6:37 am
by Sandrine
Hallo @all,

we had to wait > 2 months for the result of the antibody test - it was negative! :D

The result doesn't change her symptoms, but MS seems to be the "better disease"...

I'm relieved :)

Sandrine

PostPosted: Sat Jul 18, 2009 6:53 am
by Lyon
Sandrine wrote:I'm relieved :)
That's good to hear! Likely, a stronger MRI would show lesions in cases where they "seem" non-existent with today's commonly used MRI machines.