Charcot Marie Tooth Disease

[Soulman]

Hi .
Is there anybody out there who would like to chat ,Iam a 47 year old guy & have just recently been diagnosed with cmt after several months of constant test .It's difficult to get anyone to understand what Iam going through at this time & of course individuals with the same ailment are fully aware of the problems involved so please do write.

[EZgoing]

Soulman, I totally understand where you are coming from. I'm 50 and have lived with CMT all my life (issues when an infant). I'm more than willing to talk to you when ever you want. I'm not sure how to give you an email address since the mod here removes them (not a bad thing in this day and age).

I do know of a group were you can find a lot of members with CMT and the group is very active in posting research, supporting it's members etc..

Try going to

CMT-Support.com

It's a Yahoo group, and you will have to have a free Yahoo account to be able to post, but the archives and information are available free to anyone on the net. (I used to help run the group but had to give it up for some personal problems that arose). I'll keep watch at that group and IF you decide to join, make some sort of mention of chatting with others. I know how to get your email address through their members list.

Hope to talk to you soon..

Ez

[Soulman]

Hi Ez.

Thank you so much for writing & also for the info regarding the CMT support group I will for sure be checking into that as soon as possible .Look forward to chatting. Finally it's heart warming to know that there are people out their how understand this if I may say ailment.

Soulman

[Tamara]

Hi Soulman! I was diagnosed 12 years ago. I am 50 now. My mother,half brother, brother, half brother's daughter, my oldest son all have it. My half brother and his daughter are both in wheelchairs and so was my mother. It is pretty rare for it to be that bad. I still have alot of my muscle left in my calfs but I do have severe numbness and pain. I work at a restaurant(13 years) and clean houses. That's probably why I still have the muscle but I can now notice the wasting away. Keep in touch. I would like to know more.

Tamara

[Soulman]

Hi Tamara
I have also noticed a significant amount of muscle wastage on mu left calf & like you I do suffer some pain nothing that would drive a person insane but it's there if you know what I mean?. I have been doing some light exercise until & get physiotherapy lifting weights on my legs etc this helps for a little while , the main problem I do have is that I am getting self awareness of the way I walk , it's to the point that I'm getting totally depressed is the normal,having been diagnosed yourself 12 years ago you would know of what I'm going through . Also noticed that I am losing grip in both my hands this I was told is because of the cmt .I firmly believe that a good combination of exercise & good diet that we may be able to control the destructive waste in our muscle tissues ..
Hope to hear back from you.

Soulman

[Tamara]

I have constant pain. I wear braces at work because of the drop foot. The only thing as far as diet is no alcohol and also no smoking. Exercise amkes me worse. Right now I'm in a rush to get to work but will check back.

Tamara