My neurologist was very interested in the beginning, and did an EMG at the first visit. The results were pretty advanced- my feet were totally numb to the ankles at that point and I had noticeable muscle weakness. She saw me every month for a few visits to titrate up the Gabapentin, then every three months. She was pretty sure that I had Charcot Marie Tooth, hereditary neuropathy, type 2 which affects the axons first. It is progressive and there is no treatment beyond symptom management.

After a year she sent me to Johns Hopkins, which is about 90 minutes away, for a second opinion in case there was a possible treatable diagnosis that she was missing. They did a skin biopsy which showed that my legs were devoid of small nerve fibers at the ankle, reduced above the knee and breaking down at upper thigh, another EMG showing multiple pinched nerves, and a large number of blood tests, but otherwise the diagnosis stood.

When I returned to her for a follow up she said there was no reason to continue coming as there was no treatment. When I asked if we could re-test periodically to see what was happening she said there was no need since she knew it would progress and testing would merely confirm that. I did say that I felt better seeing her but she said it would be taking money under false pretenses and there was nothing she could do. She does not handle pain management. I left the office in tears and was depressed for days as I really liked her but she was, in fact, correct.

My PCP prescribes my pain medications and has been extremely helpful. He has tried to learn as much as he could about CMT as I am his only patient with it, but he handles a lot of diabetic neuropathy sufferers, so is familiar with many of my symptoms. Sometimes new things come up and I think about going back but she was very definite that it would be a waste of time. Even the doctor at Hopkins, who offered a spinal tap and further genetic testing agreed with my decision not to pursue it. I received a very cordial "Good-bye and good luck" from him.

I would rather have a little more hand-holding from the doctors with this but I do appreciate the honesty and respect that both neurologists displayed.