Hi Bill and welcome to NT!

You are definitely not alone - and I hope that helps a bit as you battle the fear and frustration of an undiagnosed condition.

Many of us here have learned that we have to be our own strongest advocates if we're to get the quality medical attention we need and deserve. As a well educated person you are in a privledged position: the doctors are less likely to try and run roughshod over you. Of course, we'll all be here so you don't have to feel you're fighting this fight by yourself.

The other members have made some excellent suggestions. I would add that you might want to check out our forum for rare and undiagnosed conditions. The link is:
You might also want to check our NT's Rare Conditions Forum. The link is:
http://neurotalk.psychcentral.com/forum2.html

Cheers