My Introduction

[Guest guest]

Hello. This is my first message. (5/3/07)

I don't know how this works at all. But I will say something about myself, send

it and see what happens.

I am 45. As far as I knew there was no CMT in my parents. I grew up as a fit,

lean boy.

I started getting numb toes over a year ago. Also muscle twiches all over. I

was seriously anxious for an extended period of time about this. After a while I

noticed I had slight but definite wasting in the webspace between my thumb and

first knuckle. I knew I was sure about this because I trained as a doctor

(qualified in London 1986), although I left medicine in 1993 to pursue a second

career in art.

Despite this background, or perhaps because of it, my own GP made it clear she

didnt think there was anything wrong with me apart from anxiety/depression. I

wanted to believe her but didn't and felt even worse.

Finally a few months ago I had nerve conduction studies and 'HMSN type ii' was

diagnosed. I have had virtually nil support or useful information. It was left

to me to find out this was CMT type 2. Wary of reading depressing information

on the internet I did the briefest of searches for HMSN, saw the words CMT and

left it at that. I vaguely remembered the name Charcot-Marie-Tooth from medical

school.

After a period of coasting along and feeling maybe things weren't too bad after

all, the diagnosis now seems to have hit me hard - perhaps triggered by my

noticing more muscle wasting on the backs of my hands, and a slight achy, weak

feeling in my shins. I suppose I am still very raw with it all. I tend to

assume the worst about things. I am quite concerned about my two boys (6 and

11). I haven't had any genetic testing yet. I know compared to some my case

must be mild so far but I am fearful of it progressing, as it is.

Of course I know of no-one else with it, and have never communicated with anyone

in the same boat. Feeling pretty low I decided to take the bull by the horns

and risk plunging in to the internet - lots of searching etc. Thats how I came

across this group. If anyone has a similar situation - adult onset of CMT type 2

and can share with me any encouraging experiences / helpful info I would be very

grateful.

Best regards,