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