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Originally Posted by CMT2
Daniella and MrsD: Thanks for the welcome.
MrsD: Do you have any thoughts on supplements for genetic neuropathy caused by defects in mitochondria (i.e., CMT2)? My understanding is that most of the supplements that you recommend are mainly for diabetic neuropathy patients. But I'm curious as to whether there could be any benefit for CMT2.
BTW, I should mention that I had the Athena test three times before a genetic defect was discovered. Athena is constantly improving the test to test for additional genes that are associated with PN. Further, I understand from my discussions with the lab director at Athena that they have just completed a study to classify genetic polymorphisms of unknown significance in CMT-associated genes as either disease causing or begnine. So PN patients who haven't had the test in a few years may benefit from re-taking the test (especially if their insurance will pay for it).
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It would be nice if you could put this information up on that link I gave you to our subforum. The subforum is where we are trying to store informational posts. It is so hard to organize all the stuff that happens with PN here, with all the causes and treatments!
There was that study on Vit C...which I believe did not pan out as expected.
I don't think CMT has had the funding to do major studies with the nutrients for mito support. And that is very unfortunate.
At this time people can only try things. I know the mito patients do get a cocktail of CoQ-10 and carnitine among other nutrients.
I think we are at a cross roads of sorts between the empirical data and how to correct what is reported.
You might contact Kitt... she seems to have her own ideas about this subject, and she is more informed about CMT than I am. I see Kitt did log on recently, so maybe she will come on this thread. You have to post a little bit more to enable Private Message function. Not long now. I don't see that she has enabled email to be sent thru the NT system however.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei
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Weezie looking at petunias 8.25.2017
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