Which type of CMT do you have?

My GP has heard of it, but he told me he had only seen two people with it in 25 yrs of practice. It took visits to 4 neurologists for me, because I also have diabetes, and it was the simpler explanation for the early symptoms, As things got worse, no one could decide what it was, but would always say "no" if I asked about CMT (was in the family).

Eventually I looked at the family history more closely (I only knew of 3 for a long time, then I found 14. Now it's up to 20).

Anyway, finally a genetic test was ordered and what I kept telling them was verified. Took a long time.

So sorry this was such a battle for you abd. Shouldn't have to take this long or be so stressful!

I am ever hopeful that the 'linked in' affiliation that Scott has created will eventually give us a comprehensive base for rare disease specialists world wide!