Introduction

[Guest guest]

Hi ers,

My name is Cheryl and I have been lurking on this group for about a

week. You all are a wealth of information.

I do not have CMT, but both my Father (although that is not

his " official " diagnosis) and my brother do.

My father was originally diagnosed by a VA doctor, who said his

problems were due to contact with Agent Orange in Vietnam. He has

not gotten a second opinion, for fear of losing his VA benefits, but

is a classic case of Type 1 CMT. He has been in a wheelchair since

1982, his hands are permanently in a closed fist, has no feeling from

his elbow down, and his mid thigh down.

My brother (Jeff) was diagnosed about 2 years ago due to numbness in

his feet and tingling pain in his fingers. He now has no feeling

below the ankle. Just last week, on his 33rd birthday, he was

informed he was going to have part of his right foot amputated,

because a sore on the bottom of his foot (that he didn't know was

there until too late) had become infected and was in the bone. That

is what prompted me to search this group out.

My main question to you as a whole, how do you find doctors that

specialize or understand this disease? I feel that Jeff could get

better care than he is. It seems his doctors are dealing with the

problems caused by the disease (ie. amputating the foot) rather than

the disease. I have not heard his doctor recommend any drugs to help

the problem, other than anti-depressants, which I feel mask the

situation, not help it.

TIA for all the info and help.

Cheryl

Denver, CO