Thanks Jan! I had some genetic testing in 2007 but, the test you just mentioned was not available. I am fighting my insurance company in a teleconference type court call and am waiting on a ruling about whether or not they will cover the costs of the new test. It is a long, long battle that I'm getting so tired of fighting. Thank you for the info you've provided. They are other avenues to pursue
I don't know if this will help you in some way, but Athena Diagnostics Lab does the myotonic profile testing. The cost is $1900, but since Athena is probably out of network, you will pay $381, and your insurance pays the remaining 80%. They send you to a Quest lab if one is nearby, or they will send a nurse to you for the blood draw. It's fast, the long part is the waiting, first to set up the test, and then once Athena begins the testing. I have been waiting for a month to find out the results, but there is no where else in the US that does this specialized type of testing. Athena does the genetic DNA testing that you need. Good luck!