Re: confused about progression

[Guest guest]

Hi Teri,

My story is simple. Diagnosed as a kid, my CMT motor symptoms were

at their worst in my adolescent, teen, and college years. Ever since

age 7, I had " burning " feet. No ankle problems though. Orthopedic

shoes and a few years later foot surgery corrected a " rolling foot

gait " , however, a simple walk home from school or a scout hike (1-3

miles) just put me over the edge and in tears from pain and fatigue.

However, I spent many days in physical therapy and " beach walk therapy " (to

strengthen ankle and foot muscles) and also in horsebackriding, which was

theraputic in helping with my gait. I swam year 'round too.

All those years I worried and " feared " THE PROGRESSION. A life

changing event when I was about 27, followed by a

neurologist's " prediction " of me being confined to a wheelchair by

the time I was 30 sent me to seek " adult " help and I began to pay

attention to what was going on with my body physically, emotionally,

psychologically and spiritually.

I kept up the exercise through the years, biking, hiking, horse-

riding, aerobics, yoga, dog-walking (turned that into a business!)

and more recently have become a regular gym rat with pilates and my

greatest love, aquatics.

In my 30's I slowly started to change my diet, letting go of the

Cokes, chocolate, sweets, etc. I had already chosen a life free

from alcohol (and other mind-nummers) in my 20's. I started counting

calories, lost weight, and worked diligently on my psychological and

spiritual life.

I noticed something interesting happening...my CMT symptoms, mainly

fatigue and tremors, were becoming part of my past.

10 Years ago I started taking Vitamin E 1000 IU and drinking nothing

but Fijiwater (for the Collodial Silica, Calcium, and Magnesium) and

I continued with exercise. I noticed something interesting again...

My CMT symptoms seem to be almost non-existent, and still are now. I

walk better, posture is better, I'm healthier, and thinner. I move

with ease. The bottoms of my feet are happy in New Balance Cross Trainers and

custom made in-shoe orthotics by Stefan Moser at Swiss Balance in Santa ,

California.

About 5 years ago I took Blackstrap Iron supplements, and now (since

last May) I have taken a Vitamin B + C complex. I eat small protein-

rich meals or healthy fruit and vegetable snacks about 5-6 times a

day.

Fatigue IS a big part of CMT. CMT muscles have to work twice as hard

to do half the work.

Listen to your body, rest and sleep when your body says so. Clear away the

stress from your life. If your legs are weak, look into getting to an orthotist

who can fit you with some orthotics, or AFOs of some kind. Perhaps consult with

an orthopedic surgeon (or 2) to see if surgery on your ankle may help. Surgery

won't take away CMT, but it will help the " mechanics " of your walking, possibly.

The muscle twitches and burning may be helped with medications, or

first for your muscles, you may want to try drinking Tonic Water

(has Quinine in it, a muscle relaxant)

Never thought I'd say this, but drop the fear and lighten up on

yourself, care for yourself and expect the best! (you might want to

go into our Files and read my book " Funny Feet " it'll give you more

background, maybe some ideas, even though I originally wrote it for

teens with CMT)

~ Gretchen

[Guest guest]

Teri,

I think the answer is everyone has different progression rates. I had problems

since I was 2 and started walking at 3 so there was a lot of problems. After

being at the children's hospital at 5 they said I had CMT but had no idea where

it came from since it is genetically passed on.

When I was in my younger years I was able to be active and even though I

couldn't run fast and ran funny I made it through school pretty much unscaved.

When I was 18 the foot drop became a real issue. I started wearing the high

boots that tie up real high to give support but it wasn't as good as the AFOs I

got when I was 21. The problem is you become dependent on them and make things

atrophy.

Then there is the the nerve pain that is hard to explain to someone who doesn't

have CMT. I would have nights where I felt like bugs were crawling all over me

and the weird sensations I got. I would take a long really hot shower and it

helped to an extent.

Then there is the muscle cramps which made me feel like I was an old man. I

did some research and found that Neurontin could help with that. I also looked

into a drug called Ultracet for pain which is a non-narcotic. The combination I

must say really helps and the muscle cramps and nerve pains went away.

I also used to twitch like crazy and that went away. Now what I can't figure

out is how I can build strength so I can walk long distance without worrying so

much about stairs, curbs, inclines, etc.

I am having a much harder time hiding the diesease like I used to be able to do.

I am only 31 and its seems I am more like 65. My goal is to be able to walk my

daughter down the aise when she gets married but she is only 6 1/2 and the rate

I am going well doesn't look so great. My daughter most likely has it and I

worry so much for her. She is a great kid who has never had an issue with my

CMT and has helped me out greatly. I am lucky.

Andy