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Yes, and CMT friends, there ARE Drs. who know about CMT, Dr. Shy

is good, there are others. Both CMTint.org and CMTA have lists I

believe, plus the Drs. on our list.

shannon marzinski wrote:

> A DOCTOR

> WHO KNOWS ALL

> ABOUT CMT!

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  • 2 years later...
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anne,

I get my orthotic insoles from my orthotist. I have only needed 1 EMG as

an adult, back in 1999, which my Internist suggested. I do not see a

neurologist or orthopedist on a regular basis. Even last month my back

orthopedist let me go.

I was diagnosed early on in childhood and went from one doc to another,

as my parents searched for a 'cure'. That was 40 or so years

ago...there's still no arrestment, my CMT has held it's own, most of the

time I don't even think about it.

Sure, docs tried to trace family history - fruitless and a waste of my

time because it isn't there. (I did some work too, and CMT STILL isn't

there)

For any medical needs I have now (like renewing my Elavil), my Internist

takes care of that.

Yes, there is no arrestment currently available, but treatment for me

over the years has been physical therapy, wearing good shoes orthotics,

restful sleep, exercise, and keeping myself healthy.

No one, doctor or another, can 'predict' how CMT will progress or not

progress in a person. One doc told me at 27 I would be in a wheelchair

by the time I was 30. Not there yet, and coming up on birthday #52 this

summer. You're right, 'progression' cannot be determined.

So now the only doc I see annually is my Internist. It is really

'freedom'! ~ Gretchen

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