Again, you guys are Right On! I was able to have a very comforting and ,more importantly, intellegent conversation with the specialist that I met with today at the Shepherd Center. Thanks for all the information. It is as if my ex-neurologist was reading from the general text book and the specialist is reading from the technical operations program book! What a difference. My frustration level dropped and I wasn't as angry, but I cried. I just want to know what to do and how to address it. The specialist, Dr. Thrower, prescribed Provigil for the fratigue (hopefully, now I will not be laying on the sofa overly tired while my kids order pizza for dinner). He explained that there is some measure of medication he can give me, however, we need to have my have my eyes reassessed by a NeuroOpthalomolist (so I'm going to a specialist at Emory).
We talked about the spinal inflammation; such as, the affect heat will have on my body. This is something I specifically raised with my ex-neurologist who dismissed it as a problem. We talked about the specific distinction between TM, Devic's and MS as well as their shared sypmtoms and how each is managed.
Yes, I'm feeling slightly better.
Bev
From: "Grace M." <[EMAIL PROTECTED]>
To: "Tim Mulvihill" <[EMAIL PROTECTED]>
CC: "Devic's support" <[EMAIL PROTECTED]>
Subject: Re: Not Devic's (MS)- then what??? OK, now Not MS (Devic's)???
Date: Wed, 27 Sep 2006 18:29:50 -0400
Bev,I was just getting ready to send you a post to tell you what Tim just said. TM does not progress into MS or Devic's but is rather a symptom of both diseases. If one ends up having one or the other, they have indeed had it all along. TM, MS, and Devic's are 3 *seperate* entities. Please print out the new 2006 Diagnostic Criteria and take it to your neuro.Grace.
On 9/27/06, Tim Mulvihill <[EMAIL PROTECTED]> wrote:
I am sorry you are having such a time Bev. Is your Doctor aware that TM
rarely (if ever) causes visual problems? Also, TM does not "change"
into MS or Devic's. If they find out later you have MS or Devic's, you
have had it all the time they just were not able to diagnose it. TM,
Devic's and MS are DIFFERENT diseases and they do not change from one
to the other. This goes back to where I had a problem with the Devic's
definition being called TM with reocurring optic neuritis. It's not.
Grace finally got the TMA to change the wording they had on their web
site. The lesion's in TM are different than they are in Devic's. The
lesions in Devic's are longitudal. These doctor's make me crazy
sometimes. TM means that the lesions "trans verse" the spinal cord,
they go across the cord. Is your Doctor still consulting with the Mayo
Clinic? I think your Doctor really needs to read up on the new Devic's
spectrum umbrella to make sure you should not be being treated with
something like Imuran. Please make sure you monitor yourself. Any new
symptoms or worsening of old ones don't wait, get it checked out. Sorry
for "shoving" my opinions on you.
Tim Mulvihill
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