introduction

[Guest guest]

Hi Everyone--

My name is Jo and I'm 32 years old. I was diagnosed with CMT when I was twelve

but only because I was part of a university study. Since I lived in a

low-income family, I did not get the proper care for my CMT that the study

coordinators suggested. For years I just kind of

" ignored " it; I had to live with the fact that I have trouble climbing stairs,

can't run or jump and can't wear cute shoes, LOL.

I noticed just recently that I've been experiencing more pain and more

difficulty getting around. My drop foot is getting worse and I've lost complete

movement and feeling in my left big toe. I'm tripping and hurting myself more

often and honestly, it's starting to get frustrating. For the most part, people

appear to be

understanding but sometimes I catch them sighing and rolling their eyes at me.

I've approached my doctor about this and she just kind of stares at me blankly

when I tell her about CMT. It's almost like she doesn't take me seriously.

I've been reading the posts lately and am learning that there are possible

surgeries out there that may be beneficial.

I was wondering if there is anyone here who lives in Austin, TX who can refer a

doctor who will listen to me when I talk about my CMT and discuss options. My

current doc never talks to me about it and just tells me I need to stretch my

tendons more--which I do, but

it doesn't seem to help. I've been doing the same exercises I was taught when I

was diagnosed nearly every day. I apologize if I'm blabbering, but I was so

excited to find this group! I don't know anyone else who has CMT and don't have

anyone to talk to about it.

I don't even know what AFOs are....I hope to make some friends and to learn more

about CMT--I can read the encyclopedias until I'm blue in the face, but until I

talk with other people who have it, I don't think I'll ever truly feel

comfortable about it. Thanks for taking

the time to read me babble!

Jo