Re: Finding info on type and insurance covering genetic testing

[Guest guest]

Hi Gretchen -

Thanks for the welcome I can't believe I'm even saying this, but I'm

looking forward to getting AFO's! ( that " reality issue " keeps popping up)

My doctor says to wait until after the nerve conductivity test, to decide on

what type, and how many. That's next week.

I need to find information regarding how important it is to determine what type

of CMT one has; and do insurance companies generally cover the testing? (I

better re-read my policy....)

Thanks again - in NH

[Guest guest]

Hi ,

Welcome!

I go to an MDA sponsored muscle disease clinic in CT and the portion of the

genetic testing that was not covered by my insurance was covered by the clinic.

However, I do not know what they are still covering in these days of economic

problems. Best to check with the lab and with the doctor's office/clinic.

FYI, I had my 1st nerve tests by a non-CMT neurologist in 2006. (I was

diagnosed with CMT around 1970). Later in 2006 I went to my current specialist,

who read the results of the tests and said Type 1, probably 1A (because it's the

most common type) but let's do the DNA test. That came back negative for every

subtype they can currently test for, along with HNPP. This year, he asked if I

would be willing to let him do another EMG/NCV because maybe the 1st guy messed

up or something.

We did the test and yes, I do have Type 1, but of course we know no more than

that. Apparently I really am " special " lol! He has promised more DNA tests as

soon as the scientists come up with ways to test for the other subtypes. In the

meantime, it makes no difference in the day to day management of my CMT. Of

course, when they start finding treatments and cures, knowing the type will be

more important.

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