I think you need to let them know you think you NEED to be tested for
dystonia and do the trials accordingly.  I don't know why they would
diagnose you for one thing and test you as if for another.  I think you need
to ask them why.  But then I'm not sure you'd get a good response but at
least you would have asked and let them know their incompetence cost you
peace of mind and a pain-free life.

Kat

----- Original Message -----
From: "Jennifer Zubko" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, April 21, 2002 3:25 PM
Subject: Bobby...Kat


> Dear Bobby,
>
> The team in London was, no doubt, trained by your friend, or someone like
> her. I have beemn referred to another team, am just scared because I have
no
> idea how long it will take to meet them. I DON'T THINK ITS FAIR TO GIVE
> SOMEONE ANOTHER DIAGNOSIS, THEN NOT DO THE TRIALS FOR IT. (FOR EXAMPLE,
> Dystonia can cause all my symptoms and pain, but it was never discussed
with
> me and the medtronics protocols for pump placement with the 2 different
> disorderes are vastly different... for dystonia it starts at 48o mcg, for
> spasticity, only 50. And to answer Kat... I am still concerned not only
> because I have discovered this, but because theiur screwing up with the
> lumbar puncture still causes me pain... If they say I have dystonia,
should
> they not do testing for dystonia?? And if it is causing my pain, no wonder
> it didnot help. The other thing is that dystonia is hard to
treat/diagnose,
> so my good day with placebo could have just been a result of the dystonia
> itself-- ie hard to diagnose, symptoms, intermittent, etc.
> What does everyone think?
> Jenn