Quote:
Originally Posted by ErinBear
Dear Poetist,
I have a hunch that, one day, there will be more tests to check on different variations of MG that we can't detect right now. Some of us who are sero-negative right now might show up as positive later. That's my guess. For the meantime, we need some brave doctors like you found, and like I've been fortunate to find, too. Please hang in there and take good care of yourself! I hope Winic1 is doing okay, the one who started this thread. I send good wishes.
Take care,
Erin
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I think you're right, when they know what to test for, there will be fewer "seronegative" victims of this.
Still have my "miracle pills". Don't know if the doctor has decided she can officially call it MG for me yet. CT scan shows no thymoma, AChR test was negative. MuSK test is stalled by insurance hell, I have someone inside the company working on it, I expect that, if it ever gets approved, it'll be 2018 or 2019 by then.
Seeing a neuromuscular specialist at Yale next month, on request/referral from current neurologist. Have been to specialists at Yale in the past, for other problems. Not impressed, at all, with Yale. In fact, I believe I saw a neurologist there, for this, a few years ago (think he was with Yale, but not entirely sure, was in New Haven, tho) who started by promising me that he would figure out what was wrong, wouldn't just pass me off like so many before, then immediately passed me off to a Yale-associated Neuro-Ophthalmologist, big reputation, who was basically senile and spent the entire exam yelling at members of his office about me getting signed up for their patient portal (after interrupting the exam 5 times to call and yell at people about it, I still never got signed up) and yelling at me whenever I answered him because I didn't say, word for word, the exact same thing I'd written on the 8, yes EIGHT, pages of paperwork I'd had to fill in before going. They're just running on past reputation, at this point. But, maybe this new guy is worth something, time will tell.
Meanwhile, I still have my miracle pills, and I am using just 1/4 pill every three-four hours or so most of the time, 1/2 pill if I want to take a walk with the dog or am going to do something more strenuous, and am hoarding the extra pills I don't use (have prescription for 3 per day) against my fear that they will say, No blood test-No MG and take them away from me. Asked our little small-town pharmacist for extra moisture-oxygen absorbing capsules to put in the bottles to make sure they don't go bad. Pretty sad state of affairs when a patient has to hoard their medicine against the possibility that a doctor will rank a lab result higher than the patients successful response to it.