what to expect in the years to come

[Guest guest]

Hi ,

I too had surgery as a child, physical therapy, severe balance

problems, fatigue and falls. Don't know what type of CMT I have - but

EMG tests show it is axonal. I also had the muscle/nerve biopsy, and

spinal tap.

I had some wonderful medical care, although somewhat experimental, I

was pumped full of potassium, Ritalin, and later waas in a drug trial

for physiotigmine. I managed to have a great life and so far CMT has

not stopped me from doing anything I want.

I work, travel, have home/family life, garden, exercise faithfully,

eat right, and have found Vitamin E to be of great benefit for my

muscles. I do not need leg braces or other adaptive equipment, just

some in-shoe orthotics with good shoes, and I'm on my feet most of

the day.

My whole attitude and outlook on life with CMT changed 27 years ago -

I stopped " worrying " and turned to complete acceptance and gratitude.

I discovered my life is what I make of it, and I get out there and

live! (With a big smile too!)

~ Gretchen

[Guest guest]

Hi Gretchen,

Thank a million,I really appriciate that you took the time to respond to

my e-mail. It's stories like yours that make me put my chin up and say " Hey

there really is a brighter side to this disease "

Again THANK YOU,

LISA

gfijig <GfijiG6@...> wrote:

Hi ,

I too had surgery as a child, physical therapy, severe balance

problems, fatigue and falls. Don't know what type of CMT I have - but

EMG tests show it is axonal. I also had the muscle/nerve biopsy, and

spinal tap.

I had some wonderful medical care, although somewhat experimental, I

was pumped full of potassium, Ritalin, and later waas in a drug trial

for physiotigmine. I managed to have a great life and so far CMT has

not stopped me from doing anything I want.

I work, travel, have home/family life, garden, exercise faithfully,

eat right, and have found Vitamin E to be of great benefit for my

muscles. I do not need leg braces or other adaptive equipment, just

some in-shoe orthotics with good shoes, and I'm on my feet most of

the day.

My whole attitude and outlook on life with CMT changed 27 years ago -

I stopped " worrying " and turned to complete acceptance and gratitude.

I discovered my life is what I make of it, and I get out there and

live! (With a big smile too!)

~ Gretchen

[Guest guest]

Hi ,

I saw your post on the list and wanted to write you as I'm an adult

with Dejerine-Sottas. I was diagnosed at age 12, though I'd had symptoms

when I was an infant/toddler. I am now 31. I don't mean to scare you, but

I am severely affected; I am a quadriplegic and ventilator dependent. Most

people will not be so severely affected though! But believe me, whatever

problems you and your kids may run into with Dejerine-Sottas, it's BEEN

THERE DONE THAT as you said!

I know what you mean about LONG years of doctors trying to get a diagnosis;

in my case they ran test after test when I was two and couldn't figure it

out, then started up again when I was 12 because I needed scoliosis

surgery. (There's something you'll really need to look out for with your

kids; scoliosis. Also respiratory problems!)

There is very little out there about Dejerine-Sottas, so I started my own

site about it at http://www.dejerine-sottas.com/ . Please sign up for the

message board and post an introduction; another adult with Dejerine-Sottas

and I are talking about forming a foundation to raise money for research as

well, so I hope to get a community going there.

Please feel free to ask me anything you like, I hope my experiences can

help the next generation of people with Dejerine-Sottas.