My appointment with Dr. Shy

[Guest guest]

Hey everyone! Well today was my appointment with Doctor Shy and all the

doctors at his clinic and it went pretty well! Our appointment was at

9:30 but we got there early and they took us back right away! Awesome!

Then we went into a room with a genetic counselor. She talked and

explained a lot of genetic stuff and wrote down our family history. She

couldn't really say much, because I am the ONLY one in the family that

seems to have CMT. Then we headed off to have my first test down. They

did a test where they put a vibrating block on my hands and feet and then

I was to push a button, yes or no, if or if not I felt the vibrations.

Then they repeated that test with a little thing that put out coldish air

and I had to say yes or no, if I felt it. Next we headed off for a

NCV....ooh...THAT WAS NOT FUN!!!

I jumped a lot when the impulses were shot. Like the pain just made my

whole body move! Oops.... After the NCV, we saw a physiatrist who

prescribed new AFO's after he examined me and watched me walk. He thinks

I need AFO's with a hinge so that my foot can still use the movement it

has and then the AFO wouldn't break because my movement wouldn't be

pressing on a NON moveable brace. After he had talked to us, We saw Dr.

Shy....and he examined me. He just did a basic examination and asked some

questions. Then we had a lunch break. It was kind of funny, the staff was

like begging him to let them take their break. And my aunt works at

Detroit Receiving Hospital so we saw her for lunch and she gave us a tour

of the department she works in. Then we came back upstairs and finished

up my testing. I had an EMG-like thing done with a needle stuck in my

hand and one stuck in my upper arm. And they did some more NCV testing

that they hadn't finished. That was not fun. One of the doctors asked how

I was doing during one of the NCV's and I was like, " IT'S STILL BETTER

THAN MATH CLASS. " They said I was an optimistic patient. LOL! Then my

testing was done and the genetic counselor, Dr. Shy, and a neurologist

all came into a room to talk to us about all the testing and what they

thought. They all said that it looked mostly like CMT2 but that there is

no guarantee. Then they told us that they recommended having some genetic

tests run to rule out certain types of CMT1. They're thinking those tests

will probably come back normal but they need to rule them out. Then by

ruling them out, they are thinking that an experimental group may be

willing to run CMT2 tests on me. The CMT2 tests are not available to the

public but they can test a small amount of people. Anyways, they think

it's CMT2 but they are also confused because no one else in the family

has it. They want me to try a patch that has medication that could help

my nerve pain....Then we were done and it was all good! ALL IN ALL THIS

APPOINTMENT WENT WELL!

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