Introduction

[Guest guest]

My name is Lester Levine. I live in Los Angeles, California, USA. I am 68 years

old, and had my first experience with the onset of CMT in 1994, when my left toe

would not clear a curb at a street corner and I fell. Since that time my

illness has progressed to a point the I wear braces on both legs, and now

experiencing a loss of strength in my upper limbs and hands. I am also

afflicted with several other illnesses, including arthritis,diabetes, high blood

pressure, high cholesterol and 14 years ago a double bypass surgery.

I use trekking poles to walk and do so each day up to 2 miles. I'm hoping for

the silver bullet stem cell.......

[Guest guest]

Welcome Barb,

Thanks so much for introducing yourself.I too have no pain - except occassional

'burning' in my feet. I too have had the lumbar puncture, after a " normal " EMG

reading. Back then that was standard here in L.A. And that was clear. As for

the nerve biospy, I had that, 2 different places on one leg. But now there is a

much less invasive skin biopsy,, so ask your Dr. about that, but since you

already had an EMG, it's really not needed.

My parents did not have CMT either. Yes and my original diagnosing Dr. was an

orthopedist who, after watching me walk (I was a kid) said I have CMT. He said

it may be mildly progressive or not at all. 48 years later, I still have it mild

with no real progression. As for the genetics of it all, in my case, my

neurologist now concludes it may be a type of CMT 2 recessive (hard to trace

since the family is deceased) or a new mutation.

Sometimes symptoms of CMT get more progressive overtime, but do not go away

completely, unless they can be suppressed with medication - like tremors can be.

Then there is always surgical correction of feet and hands, but with all, you

still have CMT.

As for Minnesota, I recommend Dr. Dyck, Klein and staff at Mayo or also

Dr. Gareth Parry at Univ. of Minnesota. It is important that you read everything

you can about CMT and ask alot of questions so you can learn to manage well. It

is not necessary to know which type you have, unless you plan on participating

in a research project of some kind. I enrolled in a Type 2 research project at U

of Miami two years ago.

Athena Diagnostics in Boston is doing most of the genetic testing - for all the

'known' types of CMT. But geneticists are finding more and more new

'mutations/types " all the time.

In order to access the information here in the Files, you need to be

signed in to with your ID and password. If you still have problems

let me know.

Yes, there is no treatment or arrestment of CMT, yet. You might wish to join the

CMTA also http://www.cmtausa.org They have a newsletter with good information in

both electronic and paper format.

CMT has not 'altered' my future. Sure, as a young kid and young adult I thought

it would, but nothing stops me from doing what I want or going where I want. II

have exceeded my own expectations. I have changed my diet and nutritional needs

quite a bit and also am in the pool 3-4 days a week, plus some biking and now

quite a bit of garden work. I maintain a low body weight, have no high blood

pressure or cholesterol problems. In other words, I am 'healthy', I just have

CMT!

It is very important to learn to pace yourself - so muscles do not get

overworked. Also, be careful about the Botox. I realize it is for your face, but

it can still be circulated in your body, and this is not something good for CMT

muscles and nerves. When you get to our Files, look at the articles in the Botox

File.

Gretchen

Santa Barbara, CA