Re: Intro and questions (long)

[Guest guest]

Hi, I'm Shirle, and I live in the southeast US. My father and his brother had

severe CMT . So I have a father, uncle, aunt and 2 cousins who had or have CMT.

And I think I have some symptoms. I have hammer toes and a high arch (though not

awfully high). Lately I have noticed that my lower legs are very thin as I

remember my father's being, and I don't have the strength to jog as I used to.

I'm in my middle 50's but my hobby is showing Australian Shepherd dogs in the

breed ring, and in performance sports. I notice a lesser ability to start off to

run in the ring, and some balance problems- feels as if my feet are going to

turn over. I wear Natural Balance sneakers and orthotics, which help a lot.

The most puzzing (and incredibly painful) thing that happens periodically is

muscle cramps in my feet, lower legs, and behind my thighs. If I tried to swim,

the muscles behind my thighs would knot up and have me in agony if I tried to

kick from the hips, and definitely if I tried to kick from the knee. Occasionaly

I even get these cramps in my hands, fingers and of all the odd places, my

throat!

Every doctor and the 2 neurologists I have seen have brushed off the idea of

CMT. I got the feeling they didn't really know what I was talking about, or

didn't think I had the signs and symptoms. I have had 3 foot surgeries on my

feet. The first orthopedic surgeon told me that the bone at the back of my heel

had died, and when he pulled back the achilles tendon to get to it, the bone

just fell out into his hand in a bunch of flakes and chips. He scrubbed my heel

to remove all the dead bone, let the tendon slip back, and I was on crutches for

a week. He said he was going to have to make up a diagnosis so that the

insurance company would reimburse, but that he really had no idea what I had.

He filed on it as juvenile rheumatoid arthritis, if I remember correctly (that

was 12 years ago). Then, a year later, the same procedure was needed on the

other foot. I had had terrible pain with standing, walking, and just about all

the time regardless of activity.

Then, 4 years ago, my right foot began with the same symptoms, pain on standing

and walking, and if the hem of my nightgown touched the heel, it was like an

electric shock. Another surgeon did the surgery- a specialst in foot and knee

surgery. He said that not only was the bone dead, but the achilles tendon had

" rotted " where it inserted into the heel. He cut the tendon away and cut off the

" rotted " part. He then split the tendon, left part of it in my leg and brought

the other end to my heel where he secured it with 3 titaniam screws. I spent the

next fourteen weeks in a cast and on crutches!

The good part was that I constantly wiggled my foot. And I went back to work

after the first week. When the cast came off and the walking boot went on, I

went for PT, and the therapist said he was totally blown away by how much range

of movement I had in the foot after so long in a cast. Does this " dying bone "

sound like a CMT symptom?

At this point, the thing that bothers me most are the agonizing cramps that

happen any time I flex my knee and push with my foot (like turning over in bed).

I'm concerned with my lack of " push " when it comes to running, but can work

around that.

Sorry to be so long, but can you, the CMT educated folks on this list, tell me

if it sounds as if I have CMT? If so, what information should I take to my

doctor to verify it? And what can I do to maximize my ability to remain active?

I'm fighting a weight problem, too, but have been losing a little along by

cutting back how much I eat. Hard to do- especially when you're an ice cream

lover!

Thanks for your patience with this long post!

Shirle in Alabama