Thanks Mrs. D. I agree it does sound complicated. I called NIH today to see how I go about making an appointment. They said they don't take appointments. You have to qualify for one of their research studies. I placed a called to my neuro and I'm waiting for him to call me back. I don't know if he realizes that or he does and wants to see if I can get into a study.

In the meantime, a few months ago I went on top doctors in my area and made an appointment with a neuromuscular doctor that was listed and is in the city. I have waited a while but I see her tomorrow. Hopefully, she will have some answers.

Thanks again for all the help you offer to everyone here. hopeful