If I may ask, what was so strange in your presentation. Do you have MuSK?

I have an unusual variant of MuSK (which means a rare variant of a rare type of a rare disease).

My neurologist suggested trying mytelase which has been shown by some to be better tolerated in MuSK MG. (from all the neurologists/MG experts involved in my care he was the only one who bothered to read this one paragraph in one paper).

I take a very low dose (5 mg. three times a day) and it did lead to some mild but constant and predictable improvement (unlike mestinon which made my illness less stable than it already was and injections of neostigmine which would lead to a very dramatic and very short improvement).

The first sign I have for an exacerbation is that I start having muscle fasiculations after I take the mytelase. So, I have learned not to take it when I am doing worse.