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Date Posted: 09:44:42 06/25/00 Sun
Author: Buzz
Subject: Re: The second oppinion/ how it went, worth a read.
In reply to: maggie 's message, "The second oppinion/ how it went, worth a read." on 16:47:02 06/24/00 Sat

Maggie
I don't know what to say!
I'm happy that you have found a wonderful neuro,
and I'm sorry that you have such a sever case of Dystonia. I looked it up, and it doesn't sound pleasant at all.

Please keep in touch. Let us know how we can be of help, OK?
Buzz


> I went for a second oppinion today so I thought I
> would update you all.
> Meuro thinks that yes there are some ms traits but
> wait for it ,He is quite sure that it is a disease
> called DYSTONIA.
> Its very rare Ive just looked it up and a staggering
> 89.4%
> of doctors or neuroes will NEVER COME ACROSS A CASE in
> there entire career. There is no cure, treatment is
> available but is complex.There is a 50/50 chance of
> passing it on to my boys.
> The neuro wants to include another collegue in the he
> wants to admit me asap to hospital.
> NO WONDER NO ONE KNEW WHAT IT WAS.
> He did a funny thing under my chin with the hammer and
> sent my jaw into spasm.He knew what he was looking for.
> There are only a very few specialised centres in the
> UK that deal with this apparently.
> He said that I have some MS traits that we need to
> look at but he said he thinks it is dystonia. His
> partner is very up on it apparently so thats good.The
> neuro said he wants to do some tests such as evoke
> pot,eeg,and so on.This disease does not show itself on
> MRI or anything else for that matter.
> Im adopted and was raised in part in childrens
> homes,Real mother was UK father was German.
> I have severe drug reactions{I fit as a reaction} that
> to was an indicator of this disease.
> HOW WILL I FEEL IF IVE GIVEN THIS BASTARD TO MY BOYS???
> CANT BEAR THE THOUGHT!!!!!!!!!!!!!
> LUV MAGGIE. X

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