New Introduction

[Guest guest]

Hi, my name is Kim. I am new to the group. I am not sure if I have

CMT. Without boring everyone I started with problems with my legs

and feet at a young age. At age 13 my mother noticed that my right

foot seemed to be turning in when I was walking or running. This

began my visit to numerous physicians, who said that it was

associated with growing. My problems with pain, sprains , falls and

ligament and tendon pulls tears and muscle spasms, started at a

younger age, 4 to be exact, but . . . through it all I danced -

Ballet, tap, toe/pointe and jazz for more than 10 years.

Anyway, without going into a whole long drawn out story, my right

leg continued to get worse and my physician prescribed an AFO last

year after numerous falls, and the continued turning of my foot. I

was not a very good patient and did not wear the AFO the way I

should have therefore, I had more falls. I also noticed that my

left foot and leg were affected more than I noticed in the past. (I

have had all kinds of tests in the past to rule out MS, etc. . .)

In October I went back to my doctor. For several years he ruled

that my problem was strictly orthopaedic, complicated by some nerve

damage after a fall off of a stage in high school, but now that the

problems seem to be symetrical he became more concerned and sent me

for an EMG and NCS in late October. This is the first time it was

suggested I may have CMT.

I had never heard of the disease before, but I became quickly aquainted thanks

to the web. Wow, I couldn't believe what I was reading, it seemed I finally

found an answer, not one I was looking for, but I seemed to fit te description

pretty close - although I do not have the very thin legs, and I seem to not have

problems with my hands. I saw the neurologist a week later and had the tests.

(note: my moter's family had/has horrible problems

with their legs,knees, hips, hig arches, hammer toes and poor gait)

It seemed to me that the tests would confirm CMT, but they did not.

I fell into the normal range. Although I did not look forward to

having CMT, it at least would have provided me with an answer. I

went back to my doctor, who now had me go to be measured for an afo

for my left leg. When I went to be fitted, I was told they would

need to re-fit me with a new AFO for my right foot as there was

considerable change in the last year.

As I mentioned earlier, I was not good about wearing the brace and I seemed to

pay the consequences. So, now I received my new braces last week, and I went

for a PT consultation. At the PT consult the theapist thought it was odd that I

would be prescribed AFOs for an orthopedic problem. He seemed to think that my

problem is neurological - and asked if I had been tested for CMT, as I exhibited

symptoms. He also noticed extreme tightness in my hips. Now he wants to see

the neurologists' report. He truly believes that my problem is neurological. I

have gone to doctors for these issues with my legs and feet for the last 28

years, as I turned 41 in September.

My question is . . .did anyone else have a hard time being

diagnosed? did anyone have normal and/or inconclusive NCS's and

EMG's? I am a bit confused by this whole thing. I would appreciate

any insight . . .

Thank you!

Kim