severe CMT?

[Guest guest]

Rob, I feel your conserns. I can only tell you how I feel and where

I'm at. I'm 52 years old, my hands got worse the past year or so...my

feet are more or less the same and I walk fine with AFOs. I'm not

sure how bad my hands will get also. I think I have a mild case too,

I feel very lucky that I'm able to do the things I do now.

I'm sorry I cannot help more, but did you read about vitamin C? I'm

hoping of course for a cure but I will be so happy if it just stops

the progression and I'm like this for the rest of my life. There is

hope for sure coming our way..I hope it reaches us fast.

Thank you for asking this, I want to know from others as well how

their answer will be.

Spy

[Guest guest]

HI all,

Again, I am very new to this site but I find it very helpful and a great

place to learn how others cope.

I am 57 yrs old and am a spinal cord damage as of 20 yrs ago. I also

found out after that accident that I was a partial spina bifadi baby. I had

no idea that I had CMT also. I always had problems as a child but thought I

was just a dork, knock-kneed, clumsy, and unathletic. Gym class was a horrible

experience cause I looked normal but body said " NO " .

I was at Mayo Clinic twice for foot surgery which they related to the

spinal cord damage. NOT it was CMT and the perfect looking CMT foot as I now

know. You would have thought that they would have at least tried to rule that

out. NOT

My daughter called me one day and asked if I had ever been told I had

CMT. Of course, I told her that there was no way in H---, stop worrying, I had

been seen by so many doctors that it was not possible. Her pediatrist thought

she had it. Very soon later I was going for more surgery and an EMG tech had

the bright light go off and suggested to tets a little further, Yep, I have

it. Thus the bilateral triple arthrodesis.

I went to SS after a bit and this brings me to the point of my story. It

was the Social Security doctor that told me that the spinal cord damage was

not the reason that they would grant me disability. As he spoke and addressed

the fact that I had CMT, my stomach did flip flops and I began to cry as the

total fear set in. I had no idea how bad this disease could be and this was

all new to me. Scared, you betcha. Sick to my stomach, you betcha. " Severe "

disease, you betcha. I got social security due to CMT only.

Now that I have learned more, I am no longer scared so much. I am learing

how to deal with it and to cope. I am on the vit c therapy and it has shown

some improvement.

Severe is there in potential degrees. Pilates, exercise, vit c, and

prayer will get tme thru this until there is a cure.

I am walking, slowly and with a cane but I will continue to do so. The

one thing that really gets me down is the " leg cramps " at night. I used to put

ice on legs but that does not help anymore. Does anyone have a treatment for

this? And, why does it only happen at night when I need some shut eye?

Thank you for all the imput and take care all.

Candy