The slightly dizzy/balance thing started long ago, and after extensive, very unpleasant testing, they concluded it's in my brain, not my ears, not my eyes. So sorry, nothing to be done, go have a nice life. Combine that with weak muscles, and mysteriously swelling, self-spraining, painful, tendon-splitting, failing joints (but not rheumatoid arthritis, blood tests don't show it) and wonky eyesight, oh, it's a barrel of monkeys worth of fun.
I've got five 60g pills of mestinon a day. That's it. Neurologist won't give any more, won't do anything more. She doesn't even know (her own words) if that much is safe. (Yet then she tried to switch me to two 180mg ER pyridostigmine a day, which, of course, didn't work well. Um, Doc, 5x60=300mg, but 2x180=360mg, so how can you think the first is too much and unsafe...??!)
Mestinon works. Miracle drug for me. It works. Casual acquaintances comment on how much better I look when I am on it. But....
Officially, I am not even diagnosed. She won't call it MG because I don't have a positive AChR or MuSK, and nothing really shows on the EMG. She's never heard of LRP4, nor is she interested in looking it up, because I've told her about it twice so far, and she just says "I don't know anything about that."
She sent me to a fancy neurologist at an Ivy League university health system nearby, to have him do the diagnosis. Only, he won't diagnose without a positive test on something. He won't speculate on what else it could be. He won't explain what else it could be. He won't tell me even IF there are other avenues to investigate if the LRP4 test comes back negative. He won't tell me IF there are other doctors or places he'd recommend I go to if he decides it's not MG. When asked what it could be if not MG, he puffed up and variously spouted things like, "I'M just a consultant" (since first mentioned neurologist sent me to him for diagnosis) and "Well, this IS the
MG research center" (meaning for MG only, and ONLY MG, nothing else.) I still have to fight the LRP4 test through my stupid insurance before I can get it done, and I haven't even started. Fancy neurologist is a jack*ss of extreme magnitudes, and I'm not going back to him. (you had to be there. Unreal. not worth the effort of another trip, let alone I'm not letting him make more money off me for doing nothing.)
Besides, I never test positive for anything. never. No matter how many symptoms, no matter how well it fits, nothing ever shows up in my blood. Never. According to my tests, I'm healthy as a horse. If only that damn horse would quit kicking me so hard....
In five years, last kid will be out of college and I'll be able to save up to go to the Mayo Clinic or the Cleveland Clinic and have them figure me out. In one year, we will be relocating 700 miles away because of hubby's job, and maybe there will be decent doctors there. Can't be any worse.....
Eye doctors here are mostly good. Going to miss them when we move.
Had glaucoma surgery on one eye in February, still on steroid eye drops because I have this insane tendency to scar, and scar tissue will destroy the glaucoma surgery. Doc said this past month that finally the scarring is decreasing. Come back in three months, still use the steroid drops. Oh, and you are getting a cataract in that eye that you should consider getting done in the next year. No kidding, six months plus of steroid drops will do that to you. But cataracts make cloudy, duller vision, and are easily handled with simple surgery. Glaucoma makes the lights go out, permanent blindness, permanent blackness, so....an accelerated cataract is just fine with me.
Will remember to call eye doctors (not sure which one will handle this, specialists are SO picky) in the morning. But several hours of complete rest by taping it shut worked wonders on the muscle soreness. So, probably I'm just fine. Fine and dandy, that's me. I got no problems. Except my attitude. I'm told I have a really bad attitude towards doctors. I tell them that's that how I get by, living on my really bad attitude. They don't quite know what to make of that...
