Don't know where to start.

June 22, 2004

Hello Everyone

I really don't have a good place to start, and I'm not sure I'm in the

right group, but the other CMT group (CMT-SUPPORT) my wife is in and I

know that I can't post there. I am a 27 year old Male that has ADHD

and some kind of neuro-musclar disorder/diease. Yes, there is a story

behind that so I guess I will start there.

When I was in 5th/6th grade in school my parents started to notice

that I was tripping and falling alot, so we went through the whole

sha-bang. Doctors here doctors there tests and more test with no

answers. This contiuned on through my school years till college when

well without my parents to tell me its time to go I didn't think much

of it. College ends and I am engaged and find a job in a different

state. After 2 kids and my walking gets progressivly worse I ok a

trip to see a Neurologist. The Neuro I see is a nice guy doesn't

belive the previous thoughts and orders more tests (another MRI) to

see if I have a tethered spine. The MRI came back normal and then the

doc says I have CMT type 3. I'm like okay..... My wife is happier

than all get out that she can name it find info etc. She get all

excited becuase CMT is covered by the MDA so I can go see an MDA

doctor and the MDA will pay for it. So we go to an MDA clinic and see

the whole lineup of people. Anyway the Neurologist at the clinic I

saw said that I don't have CMT but I have something else, he was

thinking Fredricks Attaxia (sp?) and I am supposed to go have a blood

test to make sure. Some screwup somewhere prevents me from having the

blood test so here I am now. Oh forgot to menchion that everything

that we have dug up on fredricks attaxia doesn't fit me. The picture

of the persons legs on the MDA website sure does though.

So I Guess my question is.. Has anyone had good luck dealing with the

MDA clinic or did I just get a bad experience? Also worth noting.

The doctor at the MDA clinc said that they have a full panel of tests

now for CMT. The only info I could find says there is no test for

type 3. What types are there tests for?

Thanks

Ricky

June 23, 2004

HI Ricky, My guess is they want to rule out a few other types of CMT. I

don't know anything about type 3 but that is my guess.

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