Quote:
Originally Posted by Kitt
Interesting. Heredity Neuropathy with Liability to Pressure Palsies (HNPP) is a deletion and CMT 1A is a duplication. This site can give you lots of information explaining how this is, how to test for it, etc.
http://www.hnpp.org/
It isn't current but it is well written and the person knows her stuff. She has HNPP I have seen her at one of our support group meetings.
Hope this helps. Also standing for four hours isn't helping either. Maybe you can sit at times. JMO |
Thank you both. I had the Athena test for HNPP, but it was negative. I have the pinched nerves in addition to the axonal CMT. I declined further testing "would you like a spinal tap?" were among the Hopkins neurologist's last words to me. How many people would like a spinal tap?
He said further testing would be largely pointless as there is no treatment, unless I really wanted it. Personally I could care less if I am CMT 2 ABC or D. His very last words were "goodbye and good luck" and he meant it very sincerely.
Now that my son had definite symptoms, he would like to know which variant it is, but I hate going to doctors, and there are still many that don't have tests. Also our insurance has changed, so I missed my chance to do it for free. If I meet my deductible next year I might go.
I lecture throughout class and a chair would not work, but I only have a few days left.