Welcome

[Guest guest]

Welcome to . Thanks for introducing yourself and family.

I too have no family history of CMT, but was diagnosed with it about

1961 or 2. I had foot surgery (tendons) when I was 10. By the time I was

14, more was being discovered about nerves and muscles so my doctors at

UCLA wanted to do a muscle biopsy, and they did that. At that time my

doctors were thinking maybe I had MS. They were also thinking I had MD

and later Frederich's ataxia. When I was 15 I had my first EMG/Nerve

Conduction Study, which I never knew the results, and so I continued on

with life and CMT. At 21, I put myself through a complete neuro workup

for everything imaginable, tests, tests, tests, even a spinal tap. All

the tests (for other disorders) came back negative, (the only " test " for

CMT then was the EMG/NCV) so I kept on going with my life and CMT. My

most recent EMG/NCV done in 1998 told me more than I ever knew - that I

have 'some form of neuronal (axonal) CMT.

Have you every had the EMG/Nerve Conduction study done?

CMT symptoms can vary greatly among the same family members. It is

possible to have CMT and other disorders as well. I am wondering if you

can go back to the MDA clinic and ask for a neurologic re-evaluation due

to your daughter's CMT. Or find that seminar speaker and get a

re-evaluation from her. Just some thoughts.

Again, welcome to . I hope you find US hopeful and helpful!

~ Gretchen