I should add that I am exploring other options. Specifically, I have a genetic mutation referred to as SDHB Ile127Ser, and my doctors are going to do a test to determine whether it is causing mitochondrial dysfunction which would trigger an inflammatory response and lead to neuropathy. Also, I am going to have my whole exome sequenced (all 20,000 genes) to try to find a cause of the neuropathy. I've previously had 72 genes tested and they all (except the SDHB) came back normal, so now we're getting out the big guns. Getting an exome sequenced costs <$1500. The hard part is getting a doctor to determine that it is medically necessary.
Margaret