Glad to hear you've seen a new and better doc now, Purple B! That is great news, and I know you're relieved to have a decent one who'll listen.

Have they, in what testing you've had so far, checked to make sure your cerebellum and brain stem are not squeezed too tightly down in the posterior fossa region of your head? That is, have they ruled out type I Arnold-Chiari malformation?
Chiari Malformation Information Page: National Institute of Neurological Disorders and Stroke (NINDS)