Hi,
I have a new rheumitologist, I explained to her about what my past "specialist" have said, like the Neurologist was surprised that I had a Dx of hereditary neuropathy, even after telling him about 6 people in my family with neuropathy, or my previous rheumi, who said "I don't know your father"...
So she said, why don't you just get the DNA test? She would order it if, I want. I don't know if it is necessary at this point it is only to prove to the doctor that I have it, as I know I have PN.
So my question, does anyone know how much the DNA test for CMT 1a would cost? I pay cash, so I should get a discount, but was wondering what others might have paid.
BTW the Rheumi mentioned taking Alpha Lipoic Acid, but my understanding is that it is mainly for diabetic neuropathy?
thanks in advance...

I am still scheduled for the nerve conduction study at the end of the month, if that is conclusive, I will probably just stay with the Rheumi and dump the neurologist. It will be informative to know how much the pn has progressed. She has doubled my Lyrica to 150mg twice a day, still no improvement in the pain.

Good luck, Jon. I hope the Lyrica builds up to a level that helis some. I'd be curious to know how often EMGs are dond to test progression. My neurologist looked at me funny and said 'Well, we already know you have diabetic PN."

All of my symptoms have exacerbated and my arms are now involved.

I believe it is up to the neurologist and as to what your diagnosis is. It all seems to factor in.

As for a person who has CMT we know that it is progressing and we do not need to have another EMG/NCV. A neurologist who knows CMT told us that. In the case of someone with CMT, EMG/NCV tests are more for the doctor's benefit. Of course, if a CMTer is looking to get on SSDI that is another case.

As far as the cost of DNA blood testing, it is expensive. It depends on which types of CMT you might have to test for. You can check with:

www.athenadiagnostics.com

They would be able to help you.

Well since I have never had a EMG I will just see how much deterioration, in the last 30 years, or it could indicate that it is small fiber neuropathy, which would then require a skin punch...
The increase in Lyrica has not helped for the nerve pain, but I am having blurred vision problems, so I will have to talk to the doctor about that.
The reason I asked about the 1a DNA test, my Rheumitologist suggested I get the test, regarding my family history. She was suggesting just the CMT 1a not all of them...

Check with Athena as to the cost for the one test for CMT1A. They will be able to help you on that.