Type X

[Guest guest]

Good morning Aubrey,

Our son had an EMG & nerve conducting test done. The results confirmed he had

CMT-X with a connexin-32 mutation. My husband and younger son do not have it or

show any symtons of having it. It came from myself, once diagnosed we where able

to figure out that my mom's father and his twin brother had it (although in

England back them, they where never diganosed.)But I do remember my mom's uncle

when I was a child, having all the showings of CMT.

Our son's progessing is more advanced in his hands than normally seen at this

age. We started noticing his hands over ths summer with the shakes, however our

son never complained. It wasn't until we where with the neurologist that he

admitted to not being able to open the jar lids on his model paint kits anymore.

Shocked where we, but as he put it, he doesnt really like to talk about it.

The doctor who did the testing at Univ. of Penn, actually took a look at my feet

and did some testing on myself. I am no where near as bad as our son, but I do

have it and it's showing up in both hands and feet.

I found under " Current Theray for Charcot-Marie-Tooth Disease a good list of

types and their definitions. Perhaps that can help.

http://treatment-options.com

[Guest guest]

Hi ,

I too am very active however, our 15 yr old son has it to the point of extreme

tireness happens real quick, as much as he wants to and pushes himself to

participate in sports. His doctors after the EMG and nerve conducting tests tell

us that just the simply movement of a body part that normal people do without

thinking of effort is completely the opposite for and that he does need to

listen to his body.

He loves to build model cars and has come up with ways to do so even with his

shakes. He now has a guitar and will start lessons. Doctor feels that it won't

hurt him, it may even help with his fine motor skills.

[Guest guest]

Hi :

I, too, have CMT X although I have not been offically diagnosed as such. A

cousin of mine was diagnosed as such, so I am sure mine is the same. Mine came

through my mother's family.

I have scads of cousins, some uncles & one brother with CMT. It has been in our

family for 4 generations that I can trace. There was a Green family way back

that was afficted. Do you have any GREEN ancestors? I'm into genealogy and would

like to find other relatives who might have CMT.

I have 79 candles on my birthday cake and have had CMT since I was about 5 years

old. It has and still is progressing. I do not have any remedy for it. I am not

immediately under any doctor's care for it.Still drive and keep my yard mowed

and grow some tomatoes & flowers. I have had surgery to correct high arches, and

tendon transplants to help my thumbs function better --not a lot & it has

devestated my ring fingers from where the tendons were taken.

I have never experienced any pain with the progress of this disease, maybe I

have a lot to be thankful for.

My heart goes out to you because you (and I) have to watch our children grow up

with this malady. I have been told that, with CMT X the inheritance pattern is

controlled by the gender of those who have it.Furthermore, if the parent is

male, None of his offspring of boys will be affected but ALL the girls will be.

; however if the parent is female then the chances are 50/50.Have you heard of

this, or are there different patterns?

I have a daughter & sure enough the symptoms are appearing--she's in her 40's. I

tried to deny this for all these years but I can no longer do so. Many nights, I

worried and prayed and then finally cried before sleep would come. She & husband

chose to adopt & have 3 lovely & loved children all of them we love as much as

our natural grandchildren. My son does not have symptoms and has 2 little boys

with no observable symptoms.

The men in my family seem to have the worse handicaps, but it's not a picnic for

the women either.

Nat, keep us posted--I do not write often, but I do read each message,

Best regards to all,

in the snowy land of the Illini