Hello:
I totally understand how frustrating and sometimes feeling like there isn't anyone that will listen creeps in. I understand your frustration with getting down to what the problem actually is.
Before I was diagnosed with MD 2, I didn't think a lot of the symptoms and we thought it was tied to parknosinism. My first weird thing that happened its when driving (which I am not allowed to do anymore ) I tried to let go of the steering wheel and my grip didn't release very well - grip myotonia. Then I noticed a trend in my bloodwork. I noticed a constant rise of CK levels over a 2 year period. When I questioned this an appointment I was immediately made to have further testing which came back as abnormal with suspected MD 2. Genetic testing confirmed.
I think I know the answer but I need to mention it anyway. have you looked at the mda website?- You can locate mda clinics and can find some info on docs.
https://www.mda.org/care/mda-care-centers
Another great source of info: https://www.myotonic.org/muscle-cdm

If you don't mind me asking - which Mayo do you go to?

Stay positive.
Smile - they will wonder what you are up to!!!!

I'm not sure how private messaging works here - but if you want to - feel free to reach out and we can chat more privately if you wish.

Larry