Hi,
Might I recommend you send a letter to Dr Stephen Cannon at UT Southwestern, Dallas.
I have had good luck at direct communication with university faculty doctors. I sent a letter to Dr. Robert Griggs and he answered with an email. I did go to some effort to keep it to a single page.

UT Southwestern is one of three centers in the US with special knowledge of rare (myotonic) neuromuscular diseases.
UT Southwestern is about 300 miles west of Jackson, MS and I20 is almost straight.

Type of Myotonia: SCN4A

Country: us