Hi Kim,
I was recently diagnosed by three Dr's two of who were neurologists. They tell me I have Myotonia congenita AKA Thomsen Disease. I am 53 and mine seem to be triggered when I had to drag a guy out of my car into jail in August of 21. Causing back problems which led to what was believed to be sciatica. After multiple emg's they figured it was Thomsen’s and I had no trapped Nerves. I have tried a bunch of different medications, and nothing has worked. Gabapentin sent my AHI so high I had to stop it plus it was not working well. So now I just had my blood sent of to a lab in San Francisco for DNA testing.

I have pain in my legs like sciatic pain going from my butt down too my feet and into my toes. Then I get pains that come from my back around the front of my chest. I have shooting pains all over my legs in different places.

I have found from my research that Thomsen’s is common in Scandinavian countries where one in ten thousand have Thomsen’s as opposed to America where it is one in one hundred thousand people. So, it is very rare. I can trace my heritage back to the Viking and Dane invasions of England etc. So, I have to believe that Is how I inherited the disease.

I live in the Capitol City here in Minnesota and am beginning to look for resources and I am having the same problems you were experiencing a few years ago as I see I am late to the party 😊

Have you found anything that may help?