Re: Welcome Sharon

[Guest guest]

Hi there Sharon,

Thanks for your wonderful introduction. You have, indeed, been through the

wringer just trying to get diagnosed. Some doctors are not very

knowledgeable, are they? Glad you have a good one now and that you are

going to PT.

I was surprised about 13 - 14 years ago. I just went to a podiatrist

because I was concerned that my ankles were going to collapse like my mom's

had and I was interested in getting something (treatment, orthodics,

whatever) to keep that from happening. That podiatrist in a little po-dunk

town in North Carolina diagnosed my CMT! He watched me walk - and keep in

mind that I don't have as much trouble walking as lots of people with our

lovely CMT - and told me that I probably had CMT - and he sent me for nerve

testing. The nerve testing was terribly painful, as you know, and I opted

not to return after the first session because I was told that there was

nothing that could be done about the disease.

Fast forward to today. My brother has just been diagnosed (his is much

worse than mine and he's 10 years younger) so I went to a neurologist and

an orthopede who have prescribed physical therapy for me! I'm working a

lot on balance and strengthening of the muscles around the

ankle. Fortunately, as the Physical Therapist says, the neurons are still

" firing " because I do get a little movement when I try to go back on my

heels, so we're working really hard to make my ankle more mobile.

I hope you find this group as encouraging and knowledgeable as I have.

Fran