Becky,
thanks for link, it should prove to be an interesting read. I am in agreement that we may never know what disorder my wife truly has and it is known there is no cure and sometimes no treatments for neurological disorders. We just want one of these doctors to go out on an limb and try something to make her more comfortable. Her next appt is in April and I plan on being quite forceful and demanding for what we want to happen.
Once again, thanks for the lead.