Re: New to group-To Jodi

[Guest guest]

Hello Jodi,

Welcome to . First of all, you sound like a wonderful mother! I know

you are in shock, but you are handling the diagnosis in a positive

manner....arming yourself with correct information. Everyone with CMT is

different, and they progress at different rates even within the same family.

I was 36 years old (now 41) before I was officially diagnosed. My mother,

and older sister have CMT as well. For me, my hands are affected and my

feet. I have recently had surgery on both of my feet to help my ankles from

rolling and to help my balance.

My son is 17, and I have never had him tested for CMT (his/my personal

choice). He is a toe walker, but that does not necessarily mean he has CMT

although he has a 50/50 chance. There are several mothers with younger

children who post regularly to the list. I'm sure you will hear from them.

Please feel free to ask questions or make comments regarding CMT. We all

will do our best to help you. Again, welcome and please don't panic or

stress yourself out because it is my opinion your child can sense this.

Can you share with us what signs of CMT your son is showing?

Texas

----- Original Message -----

From: <nightmere1@...>

< >

Sent: Thursday, August 23, 2001 9:22 PM

Subject: [] New to group

> Hello there. I found this group, and I thought I'd give it a shot.

> My son was just diagnosed with CMT on Monday. My ex-husband and

> friend was diagnosed at the same time. I was pretty prepared because

> I knew something was wrong, but it was still a shock. I've been

> looking all over the web for information, but I seem to find the same

> things over and over again. I really don't know what to do or expect

> at this point and time. We're waiting right now for the genetic

> testing to come back to confirm the diagnosis, but he's only five,

> and he's already showing major signs of CMT. He's a real trooper,

> though. I love him so much. I'm really glad that I found other

> people that understands this disease for support and a little help.

> Thank you for being here!

>

> Jodi

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