Hi, Hermes -

As you say, even one of if not the best facility in the country hasn't been able to come up with a Dx for you.

Where is the program Mystery Diagnosis when we need them? Now wish I'd written down the causes of some of the diseases that program has presented. Stuff nobody would think of - but some docs did.

For whatever it might be worth - did JH do autonomic nervous system testing on you? Did they test for things like Guillain-Barre (not sure of spelling), Charcot-Marie-Tooth, hereditary neuropathies, etc.? Would think so. If not, though, you might ask if they are possibilities.

Good luck at your appointment, and try to hang in there. If you feel you're getting worse, though, don't hesitate to call and see if you can be fit into the schedule really soon.

Sheltiemom