Dear Karen- because you nailed it exactly when you said it is a lengthy diagnostic process and doctors don't really know very much or have many available treatments it is incredibly important to try and get a handle on the anxiety and dpression. That weight loss speaks volumes.

It is really important that you take care of yourself emotionally as well as physically. Make sure you are getting enough rest, try to concentrate on your nutrition, think about health rather than illness if you can. Stress certainly can mke everything worse. Hope someone has ideas for ratcheting this down for you!

Agreeing with Mrs. D. about surgery often being a mistake. I have heard of so many failed foot surgeries for CMT...