Introduction/Just diagnosed

November 17, 2003

I had EMG and nerve studies done in August which confirmed my

doctor's suspicion of CMT. I don't have much info on my family as I

never knew my father and his family as my parents divorced when I was

2 and he didn't live near me. As far as I know my mother nor her

family has it. My DNA has been sent to Athena and haven't gotten

results back yet but the neurologist from the MDA clinic redid the

EMG and nerve conduction studies and he also confirmed the CMT

diagnosis. I fall a lot and have probably fallen 50 times in the last

5 years so am now using a cane. Can anyone tell me what the chances

that are that I will have to have surgery some time in the future

are. I know there are braces and other things that come first, but

just wondering how likely it is that I will have to have surgery too.

I am taking Neurontin, xanex,vicodin and ibupropen for pain. I also

take high blood pressure meds. and Combivent inhaler for COPD 4 times

a day. I am a wreck and it seems like every time I go to the doctor

they find something else wrong with me. I have severe arthritis of

the hips and spine and at present have a broken bone in the thoracic

area of my spine and am wearing a brace for that. I also would like

to know if Neurontin is a good or bad drug for I have heard some bad

things about Neurontin.

My last question is I have a daughter and a son. Should I have them

be tested for CMT? All the info I read is that they have a 50-50

chance of inheriting it.

I know this is lengthy but wanted to give the background and I only

scratched the surface of my illnesses in my life.

Maybe in the future I can help someone else in dealing with their CMT

because anything incurable needs all the help and support the people

can receive.

Thanks so much for the site.

Pam

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