Help! I've just been told I have a rare form of MS

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Help! I've just been told I have a rare form of MS

Postby LoveActually » Tue Jun 22, 2010 1:53 pm

Hey Everyone,

I saw my Neuro today about questioning my MS diagnosis and he confirmed that I do not have "Typical MS" but that I have a rare form of MS with Devic's Syndrome.

In November of 2009, I tested negative for the neuromyelitis optica antibody which puts me in an even smaller category.

Does anyone know anything about this form of MS? Or anything about Devic's that I should know? Good or bad, please share. I'm a big girl.

Thank you!
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby KateCW » Tue Jun 22, 2010 2:46 pm

I'm sorry but I don't know much, other than I was tested for Devic's and also negative. Eventually I got a PPMS diagnosis (no brain lesions, just spinal) What makes your MS different? How did they conclude this and what does it mean for medications, etc?
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Postby LR1234 » Tue Jun 22, 2010 3:22 pm

Hey Love,
It seems that many of us MSers are not "typical" I am starting to think there is no "typical" MS!!

Did you not have oligoclonal bands in your spinal fluid? I had 2 LP's which was negative and 1 that was positive (the last one). I don't think they can diagnose Devics if you have a + LP.

I will look more into Devics but i do kinda have a feeling that TM/Devics/MS are all kind of together probably all caused by CCSVI!

L x
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Postby Talisker » Tue Jun 22, 2010 3:26 pm

Found this on Wikipedia, although it does state as fact that MS is an auto imune disease.
http://en.wikipedia.org/wiki/Neuromyelitis_optica
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Postby Loriyas » Tue Jun 22, 2010 6:03 pm

LA
Found this site:

http://www.devic.org.uk/index.php



Also check out Accelerated Cure Project www.acceleratedcure.org
Although the organization focuses mainly on MS they have information on many related diseases including Devic's. ACP, in case you are not familiar with them, is a fantastic organization. Let me know what you think!

Lori
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Postby AlmostClever » Tue Jun 22, 2010 6:48 pm

LA,

What kind of test did you have?

Did your neuro send it off to Mayoclinic?

I was tested and they were the ONLY ones who can confirm Devic's (or at least they were 3 years ago!)

It is a blood test that must be shipped overnight! Is that what you did?

Also, Wolinsky here in Houston is somewhat of a specialist in recognizing Devic's from film. He looked at mine. You may want to try to get your spinal MRI in front of him!

PM me, I might be able to help...
A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby LoveActually » Wed Jun 23, 2010 9:50 am

Hey Everyone,

Sorry I was MIA yesterday. The Hubs confiscated my computer and said he had "work" to do but I think he was just trying to make me take a research break.

First off, thank you all for the info. I've attached an image of my spinal MRI that sort of clenched the diagnosis. You'll see that it was done back in October 2009. My first neuro just called it an MS lesion but my new (and better) neuro said it's not at all typical with MS. It spans along 6-7 veterbrae and it's located in my spinal cord, not on the bone.

Now to answer some of your questions...

@KateCW

What makes your MS different? The lesion on my spine is an indicator of Devic's. My neuro said I still have MS it is just partnered with Devic's. He said that I am in a small percentage where my blood test for the antibody actually came back negative. From what I've read, 70% of Devic patients test positive for the antibody but you don't have to have a positive result to be diagnosed.

How did they conclude this and what does it mean for medications, etc? I think the first part of your questions has been answered. As for medication, that's where I turn to the Mayo Clinic. They seem to be the only ones really digging into this disease. My neuro mentioned a form of chemo that is being used to treat it but unfortunately like MS, there is no cure for Devic's. I am currently on Copaxone and my neuro advised that I stay on it as it will not have any negative effect on my body. He did say that he can't tell me whether or not it will help me but since it won't hurt, he thinks I should stick with it. I'm not sure yet. Until I have more time to digest everything I'll keep with it but I just don't know. I don' know if it makes sense to stay on it.

@ LR1234

Did you not have oligoclonal bands in your spinal fluid? I was going to ask him about getting a LP at this appointment. I haven't had one yet and I thought it would help with figuring out if I have MS or not. Or at least, telling me something I don't already know. When I mentioned it after he determined that I have Devic's, he told me that if we did it, it wouldn'tnecessarily tell us anything.

@ Almostclever (love the name)

What kind of test did you have? I had the blood test done in November 2009 but it came back negative. I can't confirm whether or not it was sent to Mayo Clinic. I'm not sure if they're the only ones who can test that now but I would think not. I'm thinking about contactng the Mayo Clinic in Arizona as that's the closest one to me and seeing if I can get additional info or hopefully send them some stuff and possibly be seen.

We were going to go to the Grand Canyon this summer so maybe we'll be making a pit stop in Scottsdale.

I would definitely love some help and further confirmation (or question) about whether or not I have Devic's. The image below has the best view of the lesion. It actually expands out of the circle.

Image
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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