Thanks for this waterwillow.
It's encouraging to read that someone here has found not just a good doctor but by the sounds of it an excellent one. It's also good to hear there are a few medical professionals that are taking these obscure conditions seriously.

I have my first neurology appt. in 5 days time and I will keep your words in mind to stay positive. Not that I have high hopes - from previous experiences with the medical profession I've learned to keep my expectations low.

Thank you for sharing.