Welcome to NT ! Lots of wonderful caring people here

I truly understand your frustration with everything you've said!
I'm sorry that I'm not very familiar with your particular condidtion.......but would recommend taking with you to your appt any previous testing you've had done.

You'll get better feedback from folks who know more about your condition.
I just wanted to stop by and give you a because I know all too well how frustrating it is trying to get people to really LISTEN to what you are saying!

My prayer is that your current Neuro will take a good long look at your history of this illness and the tests you've already had. He needs to HEAR your frustration and what this is doing to your life......rather than just speculating from test results. REAL doctors LISTEN to their patients!!

Truly Caring
Rae