Devic's am I seriously going to die?

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Regular Member

Date Joined Jan 2007
Total Posts : 142
   Posted 11/21/2008 2:48 PM (GMT -6)   
So it looks like I might have Devic's. My neuro wants me to got a blood test sent to Mayo to look for it. Apparently my lesion which is considered a longictudally extensive transverse myelitis looks like that of Devic's. Has anyone dealt with this?? Devic's is often fatal. So now I thought MS was bad. I am afraid to get the test b/c I don't want to know.....

Regular Member

Date Joined Apr 2007
Total Posts : 334
   Posted 11/21/2008 3:39 PM (GMT -6)   

(((Theresa))) I’m so, so sorry you’re going through this. I can only imagine how scared you are to be faced with this possibility. I don’t have any experience that would be helpful, but I just wanted to post and offer you my support. I have read several message boards where people have gotten this test, and just because they have signs and symptoms which raised suspicion for devic’s, doesn’t mean they actually had it. I truly hope that is what happens in your case as well. Here is a bit of info on the test

Please let me know if there’s anything I can do to help. I’m sending good thoughts your way


Veteran Member

Date Joined Mar 2006
Total Posts : 2146
   Posted 11/21/2008 5:32 PM (GMT -6)   
O Theresa!

I'm so sorry!! I know u'r scared, but hang in there friend. Let the tests be completed and get some solid answers first. I know it's incredibly hard to just not impossible...but try to give u'rself a some time to be ok. I agree with Sunny...the signs and symptoms don't always mean u have this. I hope and pray u don't. When will the test be set for? Has u'r doc already sent in the blood sample? How long til there are results? Hang on friend and lean on us. We will be right here with u.
Co-Moderator, MS Forum
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is*

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 11/21/2008 6:07 PM (GMT -6)   

Hey Teresa,

I am so sorry that this is even being considered!!!  You must be very scared.  Please know you are loved and cherished here and that we are all praying for you.  Let us know as soon as you know anything.  Please let us know what we can do to help.  Hang in there, Teresa!!!

Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

Regular Member

Date Joined Mar 2007
Total Posts : 260
   Posted 11/21/2008 6:41 PM (GMT -6)   
I just wanted to chime in also and let you know i am thinking of you and will keep you in my prayers.
Dx MS December, 2006
Started Tysabri March, 2008
Baclofen/Zanaflex Combo,
Cymbalta and Provigil

Regular Member

Date Joined Jan 2007
Total Posts : 142
   Posted 11/22/2008 1:14 PM (GMT -6)   
i'm too scared to get the test. i am just pretending this is not possible. every article i have read is pretty accurate to me. The only thing is I have NEVER had ON. So hopefully that is what is saving me but God knows what else could be causing this longitudanally extensive transvers myelitis
thank you all for the support and prayers and good thoughts!

Regular Member

Date Joined Nov 2008
Total Posts : 92
   Posted 11/22/2008 11:40 PM (GMT -6)   
Please try and relax....wait on the test results before you get scared and from I read they can mostly treat it. I don't know a lot about it..went to two websites onlyl

Good luck and keep your head up:+). It will be okay.
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