I'm SO glad you finally got a good doctor who listens and observes! You have suffered for so many years and I'm hoping you'll be able to find a treatment to help. That's great that the baclofen is already giving you some relief.
I can't find any statistics on Isaac's Syndrome, either. It must be pretty rare. There are some similar conditions but from what you describe, it does seem to match.
Hi Jan,
As I said the doctor is trying me on baclofen. I can actually feel as the medication goes to work with my muscles relaxing somewhat. I am only on a very low dose and plan on staying on as low a dose as I can possibly get relief. My thoughts are: I have done research and have not found any evidence baclofen is effective for myotonia congenita. Therefore I feel a diagnosis of Isaac's is going to be correct. What are your thoughts?
Teresa