Finally getting somewhere with the genetic testing. Looks like Fullerton Genetics in Asheville, N.C. is a participating provider with our insurance. Thanks for mentioning the available labs in the US. I was looking at $5800 with Athena Diagnostics. The insurance would have paid 80% of an allowance ( they claimed not to know allowance amount until billed by lab), leaving me to pay anything over their allowance, plus the remaining 20% and a $ 500 deductible.
I was first informed by my insurance that the only genetic lab listed as a participating provider was Myriad Genetics, Salt Lake City Utah and they do not do myotonia profiles. It wasnt until I mentioned Fullerton, that they found it to be a participating provider.
The call taker at Fullerton was great. She double checked to make sure they would be able to bill a NY resident and supplied me with the CPT codes to give to my son's doctor for prior approval.
I edited my initial reply because I missed your paragraph about the EMG and Mexitil. It's best to start with a small dose and work up to the full dose on the Mexitil. Be sure to read the product insert so you'll be able to recognize potential side effects.