Actually she is extremely well qualified, thorough, and competent. She exhausted all avenues and sent me to Johns Hopkins for a second opinion. But she was distressed by not being able to DO something. CMT is progressive, incurable and untreatable, but it isn't life threatening like ALS or MS, as she rather forcibly reminded me, so she sent me on my way. I was upset because I found her consoling. Obviously she couldn't say the same for me!

Kitt, I don't quite see the need for a CMT specialist once a diagnosis is obtained since the only treatment is palliative. Pain management is generally handled by a PCP anyway since they see you regularly. Most CMT specialists in this area are pediatric.