Today, my neurologist wrote a letter to help in the fight to get my insurance company to cover the MuSK test. She wrote:

"... has a neuromuscular condition that appears to be similar to myasthenia gravis."

So, finally, after 16 years of this, I am not just fat, lazy, and crazy.
Almost 7 years after my ophthalmologist put a name to it, another doctor almost, sort of, agrees.

Feels like time for a celebration, only then I remember that this doctor had to ask me, as she was typing, how MuSK was written (which letters were caps and which small).

Then, as we discussed my pyridostigmine usage, and I told her that I was now using whole pills (60mg) and instead of just the 3 a day she had originally prescribed, was using 4-5 pills a day. I have excess from the start when just a quarter pill, then half pill, a dose was enough, so I could do this. She started saying how she didn't know how much was allowed and if it was safe to do that . . . .

Then I asked about the extended release version for night . . . . and she got it in her head that instead of the 60mg pills for day, and then the ER for night to help carry through longer, I should JUST have the 180mg ER pills twice a day. So that is what she has now prescribed, to replace the regular pills, despite saying that she has never, NEVER, had an insurance company agree to pay for them, and they cost about $800 a pill. However, my pharmacy had already processed the order before I got home, no problem with insurance, but they won't be in until Monday afternoon at the earliest because they have to order it in.

So, she didn't think it was okay to take 240-300mg of pyridostigmine a day in 60mg pill form, but she replaced that with 360mg of pyridostigmine a day in the form of two 12-hour pills that are documented not to last anywhere near 12 hours. Ummm....yeah.

So, kinda putting a damper on my Sorta Diagnosed happy dance, as my doctor doesn't seem to know what she is doing. Thank heavens for the internet and all the drug and medical websites out there.