md's message of no hope

[Guest guest]

I don't remember who brought their child to the MD &

got a message of no hope for improvement, but I can't

disagree with the doctor's comment more.

I know that we all have different experiences with CMT

& that it is suppose to be progressive, but in my

experience it has gotten both worse and better. My

CMT cycles in and out in severity.

My symptoms were acute as a child (falling fatigue

pain) & improved after 2 surgeries at age 8. They got

bad again & the md's were concerned about balancing

the need of more surgery w/ concerns over stunting my

growth.

My grandfather bought me an exercise bike & I started

eating a bit healthier & improved to the point where

surgery was no longer suggested. The doctors said

that if I hadn't been under their care during that

period, they wouldn't believe that I was the same

patient.

Extreme fatigue was a problem in college, but it

wasn't until I turned 30 that falling - foot drop &

pain made standing and walking unbearable for daily

activities. Leg braces and water exercise brought

back health - endurance & stretching helped to manage

pain.

Six years later I have removed the leg part of my

hinged leg braces. I wear the in-shoe part of the

brace with a pair of sneakers that have a rocker sole.

It is hard to gauge fatigue levels because I am

pregnant and moving around less, but I feel much

healthier than I did at 30.

I am encouraged by the postings on supplements -

exercise - stress management - and ongoing research.

I believe that what is known about CMT is small

compared to what is being discovered.

I wish you luck with your child.

Chris