Re: My appointment with Dr. Shy

[Guest guest]

In a message dated 1/24/2002 2:49:04 PM Pacific Standard Time,

butterflypower@... writes:

> 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!

>

>

Thank you . It sounds like your trip was well worth it. When will you

know if you are allowed in the type2 testing? Are you going to try the pain

patch? I am the only one in my family with CMT so I don't know why they would

be so puzzled by you being the only one with type 2 in your family.

I guess mutations really are rare without a family history of CMT.

Thanks again .

jenny

[Guest guest]

this is wonderful news (in a funny sort of way) People are listening and

taking you seriously but the best bit for me was when you added you're own

opinion of the appointment and that was 'all in all this appointment went well.'

That's good and positive - these things take time but I think you're well on

your way.

Now rest and smile this guy is there to help you

Love and hugs

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

[Guest guest]

,

I am so glad to hear of another positive Dr.s visit.

I am glad I don't have the only one on the west side

of the Biig Pond. Keep up the optomistic attitude,

the pesimystic side only get you down and on more

meds.

If the patch is DUROGESIC, make sure they start you

out on the small dose first (25mmgs). If they use the

higher dosages, like 100 it is very hard to come down

when they stop them. Start little and work up.

Durogesic is a narcotic and very addictive. It does

help the pain but take baby steps in using it. Also

since it is a skin patch watch for allergic reactions.

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!

>

__________________________________________________

[Guest guest]

shannon and all,

Sorry for the glitch in between my message and

Shanon's. My fingers are drunk now. But seriously,

again, be vry careful of the narcotic patches. They

are Opium direvitives used for pain when a lot of meds

don't work. They (the patches) usually always work

but can also send you to La La Land and some folks

like my son Jimmy is allergic to them.. he looked like

a measles case.

--- Susie Lemin <slemin46@...> wrote:

> ,

>

> I am so glad to hear of another positive Dr.s visit.

>

> I am glad I don't have the only one on the west side

> of the Biig Pond. Keep up the optomistic attitude,

> the pesimystic side only get you down and on more

> meds.

>

>

> If the patch is DUROGESIC, make sure they start you

> out on the small dose first (25mmgs). If they use

> the

> higher dosages, like 100 it is very hard to come

> down

> when they stop them. Start little and work up.

> Durogesic is a narcotic and very addictive. It does

> help the pain but take baby steps in using it. Also

> since it is a skin patch watch for allergic

> reactions.

> 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!

> >

>

>

> __________________________________________________

>

[Guest guest]

I went there last year and had similar tests - but they still aren't sure what

i have except for Sensory Neuropathy with a touch of CMT for good measure! The

physiatrist also recomended the AFO's that I have - with the hinge - they are

great! I hope all goes well for you!

Martha

Marzinski <butterflypower@...> wrote: 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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[Guest guest]

I am not sure when we'll get to do the type 2 or how or if I'll get

accepted. I will keep you updated. I think it's just confusing because

it's mainly a hereditary disorder....Hmmm..Yeah I am planning on trying

the pain patch! No pills, yay, I don't like them....

>

________________________________________________________________

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