Your experience/DNA blood test

November 4, 2003

My husband finally went to see a neurologist. The doctor did a EMG (IS that

right? The needle test?) Anyway, he then replied, You have CMT. NO, REALLY??

What a shock. We have known that for years and years. He didn't really help

very much, but he did give him some pain medicine. However, as an after

thought, he told my husband to go to the hospital and have his blood drawn for

this test to determine what type of CMT he has. We thought no big deal and he

went to do that. As he was about to have the test done, the office people came

out and said " Do you know this is a $9000 test " That blew us away. Even with

insurance that would be $3000 out of pocket. OH MY!! Do you think the doctor

just didn't know that. Needless to say, he left and did not go through with it.

DO any of you know if the MDA will pay for this test if a doctor has recommended

it?

Thanks,

November 5, 2003

Dear :

Someone is ripping you off. I was told to go a particular hospital by

Muscular Dystrophy after my neurologist confirmed that I had CMT.

I went for the blood test to find out what type. I went to a hospital in

Portland, Oregon. The test was done and all I received from the hospital was

the

results.

They were then curious about my little daughter. So, I took her to the

hospital and again all I received from the hospital were the results. I do not

remember even having a co-payment.

They are lying and ripping you off. Please get in touch with your local

Muscular Dystrophy representative. I had one in Oregon and now I have one in

Florida now. They will help you!

The test does not cost that amount at all.

Love, Peace & Harmony!

Sincerely,

Alyce

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