Re: nerve biopsy - for

[Guest guest]

Rebeca,

Wow, it really sounds like your daughter has CMT. I would go for the

Conduction test before the biopsy. This may sound like a dumb question but why

put her through the testing?? I am not judging you I am just asking because I

am curious and would like to know why. I was told I had possible CMT when I was

7 and just lived with it until my definite diagnosis at 19. I just assumed I had

CMT or something like CMT for years.

[Guest guest]

,

Well, I just want to make sure I've exhausted all my options to find a cause for

her symptoms, what if CMT is not what she has and its CIPD or some other

disorder that has not been looked at yet. What if there is some type of treat

that will stop what ever she has. I know that it's alot of What if's? I do

not want to look back and then find out that something could have been done, but

now it's to late to do anything about it. You were 19 when you got your

definite diagnosis, you could handle the testing much easier.

Also, the orthopedic surgeon said that possibly may need to have some of

her tendons transfer on her left foot,which looks pretty bad. The AFO is not

helping her much, it's keeping her foot in the neutral position and it has given

her more support, which in turn had given her more confidence.

The other question might be, What if we never find out what's wrong? Then so be

it. I know what it's like to have doctors looking at you and poking your body to

find out what's wrong at a very young age. I contracted two types of typhoid

fever at the age of 7, parents were missionaries in the jungles of Veracruz,

Mexico. We were there for two weeks, I shared a bed with two other little girls

my age from the village, one of them got sick and it was passed on to me.

I need answers, but I also ready to accept her condition to be an enigma or " it

might be this.... "

REBECA