New to CMT - introduction

[Guest guest]

I'm a 33 year old female who was just recently diagnosed with CMT

after having peripheral neuropathy in my feet and ankles for 3

years. There's not a family history of it to my knowledge other than

my father who says he has had foot numbness for about 5 years. My

ability to walk started being affected about a year ago and has

limited my activities considerably. It's like I have a constant

charley-horse in both my calves and the muscles won't relax. It's

painful and almost impossible to walk. I've actually had this problem

in a mild form off and on for years even prior to the neuropathy and

tried in the past to get help from doctors and physical therapists

but I guess they just chalked it up to me being overweight and not

very active. I never made any connection between the two. It wasn't

until it became debilitating in the last year that I basically begged

my neurologist to find a solution and reason for both problems.

I have lots of questions and it seems the doctors I turn to just

can't or are incapable of giving me any answers. If it truly is CMT

and from what I have read and my test results I think it is, it would

explain alot of things in my life as far as knee and ankle pain,

weakness, difficulty at sports, always twisting my ankles, and in the

past ten years always being tired.

I would love to hear from anyone who would be willing to pass along

advice, what has worked for you and what hasn't, what you have had to

change and not change to cope, advice on finding a good reliable

physician. I'm single and am trying to go back to school. My family

can't really help me much financially and not always emotionally. As

usual it's just me. Me to find the answers. Me to find the

treatment. Me to fight with doctors. Your help is greatly

appreciated and eagerly anticipated. Thanks.

D in Tulsa

beadingbabe@...)