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Hi All, I went to my Drs. and she prescribed me Neurontin to help me

sleep better. So far it is working well. My sis says it will only

last until my body gets used to it. I asked about a dna test to find

out what type I have and she was not going for it..she said it doesn't

matter. What do you all think? Liz

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" I agree that it doesn't matter to the patient. The result will not be changed

and none of the types has a treatment specific to it.

Doctors who are studying it tend to want to know types.

Some people have a different viewpoint on this.

Kat "

I, myself decided to get the DNA testing.. but it was to confirm the known fact

that I have type 2 and to get a family base line, so that my kids and mom could

also get the DNA tests and skip all of the other tests.. NCV's and EMG's for

example..

Ernie :~)

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Liz,

Lamar here,

Does knowing the hereditary pattern of your CMT matter? Does adding your

DNA information to the large data base of CMT information where the exact

anomalies are known to aid in finding treatments matter? Does you and your

doctor knowing the maximum about your CMT matter? (Every type is different

though they have many similarities). I would ask your doctor why it was not

important to find out all that is known about the CMT you have!

As to Neurontin, I am not familiar to it having the action your sister

described. In fact, you must build up the dose slowly until your body

adapts to it for it to work if it does. It is not a " pain pill " that works

when you first take it. It helps many. It did not seem to help me, and

made me more unsteady. From all I have heard or read the body does not

build up a tolerance to it's action.

----- Original Message -----

From: lizdexic@...

Sent: Sunday, August 19, 2001 09:10 PM

Subject: [] Dr Visit

Hi All, I went to my Drs. and she prescribed me Neurontin to help me

sleep better. So far it is working well. My sis says it will only

last until my body gets used to it. I asked about a dna test to find

out what type I have and she was not going for it..she said it doesn't

matter. What do you all think? Liz

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  • 11 months later...
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good luck iris. i still say that it is in my head, sometimes. now my dr's

are telling me no. so i know how you feel there. i also used to keep a diary

of what i ate and what my symptoms were. but i really don't do that anymore.

just gets depressing writing the same stuff. over and over. my foot dr

recently suggested a friend of his but then never followed through. i already

see a counselor to try and help me put all this together. it can be very

overwhelming. he has helped me get info on the medicine program. given me a

couple atty names. but when he ad me try and sew up my pain. i just told him

it'd be nice if it were that easy. strange how we have to prove over and over

that our pain is real. kathy in il (relieved because ssa released my sons

funds!)

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