CMT Blood Tests

[Guest guest]

I am 46 years old and have been coping with CMT since early childhood. I was

only diagnosed at the age of 15. Prior to that I wore corrective UGLY shoes

because they did not know what was wrong with me. I had MAJOR RECONSTRUCTIVE

surgery on both of my feet between age 32 - 34.

Anyhow to this day I still do not know which type I am because last time doctors

discussed my being tested the insurance I had at the time would not pay for it.

I've been reading posts here and other places online and I am amazed at how many

people know what type they have. HOW in the world did all of these people afford

to have the blood tests done????????????

I would love to know which type I have.

Diane Gracely

Coping with Charcot Marie Tooth

www.dianegracely.com

[Guest guest]

Diane,

I have CMT 2, and was diagnosed by means of an EMG/NCV by my

neurologist. He also asked a lot of questions about my childhood

and did a neurological exam. I do not know the subtype and the

neurologist did not feel it was worth pursuing this with a blood test

as there is no cure. He said in his report that he would treat me

symptomatically. I'm fine with that.

Bonnie

[Guest guest]

I was diagnosed as a teen from family history and symptoms. At about age 55 my

Neuro did an EMG and said he suspected Type 1. More recently he wanted a blood

test to confirm so he could refer me to a clinical trial. My insurance denied

the test saying that since there was no known cure, it would not change my

treatment plan. I didn't appeal the denial mostly because a family member had a

test that the doc said would confirm my type as the same.