Good news folks. My sister has graciously offered to pay for my DNA testing if after the new neuro writes my insurance they refuse to pay. Because of the high cost of the test these days if my insurance does not pay I will only have the MMD1 and MMD2 run. I feel this will be the best thing for me. I've already been tested for all the known SCN4A diseases through Dr. Lehman-Horn and so far these have come back negative. I still may have the new neuro run the test you mentioned Jan for Issacs. I'm going to see what she recommends doing first. I am curious as to where a regular neuro will be likely to know enough about the myotonias to do what is needed. After all my neuro/muscular doc wasn't so great. If she will just listen without looking at me like I'm crazy will be an improvment. LOL Anyway wish me luck. My appointment is the 25th. By the way, how many of you are seing a regular neuro instead of a neuro/muscular specialist? Just curious.

Type of Myotonia: still unknown

Country: USA

That's great! Maybe you'll FINALLY get an answer.

Here's a page that lists the testing labs:
International Myotonic Dystrophy Association

Athena and ARUP Laboratories do the VGKC antibody testing. It used to cost about $150 but I haven't seen a recent price. Since that's the cheapest, it might be worth doing first.

Jan

Type of Myotonia: Thomsen's

Country: USA

Thanks Jan. I think I will be going through athena for both test. I'm pretty sure the insurance will pay for the VGKC test but will have to get new doc to write letter for DNA. It's a shame for someone to be so excited about finding out about a disease but I'm so excited. My sister's daughter is showing signs of the disease at her mid thirties. I think that is why she offered to pay. We have got to find out what this is once and for all.

Type of Myotonia: still unknown

Country: USA