Family unwilling to have genetic testing?

[Guest guest]

Hi Amy

I think this reaction is more common then we think. It must have some

psychological triggers. Once my Mom said she would be tested but she knew she

didn't have " it " . She accused my Dad of having 'IT'. LOL

[Guest guest]

I have asked my parents to be tested for CMT1C and they have been

reluctant to do so. My husband and I are even willing to pay for the

cost, but my parents feel like since they passed the EMG tests,

neither of them have the defective gene and are CMT free.

This bothers me. If either of my children had been diagnosed with

something genetic that I might have passed down to them, I would have

no problem doing whatever needed to be done to get to the bottom of it.

Have any of you experienced this?

Also, is an EMG sufficient for diagnosing CMT?

[Guest guest]

Amy,

My family is willing to do anything I ask to help with this situation. So I feel

bad for you.

The EMG is what they used to diagnose my daughter, so it is effective for

diagnosing. They don't have to have CMT to carry that gene. My daughters genetic

testing was negative but the EMG showed axonal nerve damage and was diagnosed

with CMT 2. We go to MDA clinic Monday for the first time.

So maybe they will change their minds - the best of luck

J.Hart

[Guest guest]

Amy,

I was told to do genetic testing and it would cost me thousands. I refused

since it is very apparent I have CMT. When I asked why the doctor replied

" because it's good for science " .

I already have been through enough and if my daughter has it I would then have

to test her and spend thousands more and for what? If she has it then what?

She would still be doing the same things and why tell her she has a disability

that will eventually debilitate you?

I had to get an EMG when I was 5 and it was quite traumatizing. I refuse to

have her go through that. Later in life it maybe necessary

to have her diagnosed but still wouldn't get the genetic testing done.

I respect people for getting it done if the money is worth the knowing then

great but not at all for me.

Andy