This guy was the second opinion. Actually, if you count gp's and neuroopthalmologists, he's about the five hundredth opinion. Problem here in my local-yokel area is that no one will diagnose ANYTHING without a lab report to tell them so. Nothing--not a sore throat, not bronchitis, not a bruise, nothing. And when it looks complicated, they pass you off to someone else, then someone else, then someone else, it's always someone else's responsibility to diagnose, even when they've passed you around a circle, twice. No lab report, no problem. period.

Been to a sleep lab twice. Not sleep apnea. It's not that I can't breathe, it's that in certain positions and situations, I just sort of don't, it slows down and gets really shallow, until I feel it and work at getting back to okay by changing position and forcing bigger breaths. Told that to one of the sleep pulmonologists, his answer? Yeah, we saw that. So, I ask, what is it? what do we do? No answer, changed the subject, sent me out the door. If it isn't easy, if it isn't standard, if it isn't printed out with a name on a lab report, it just doesn't exist. I CAN do the breathing tests the pulmonologists send you to, because, of course, you're sitting there and told DoThis, so I do. It's not real life, but because I CAN make it happen, consciously, when trying. I'm fine. Only some days, I can't say but a few words at a time without heaving a breath. I can't stand and talk. I can't bend over to get something from knee level and keep breathing.

I am getting so tired of sitting down and waiting to be okay to get up for 5 minutes to try to do something again.

My ophthalmologist is sure I have mg. But he can't treat it. Everyone else in the area belongs to the same corporation that's bought all the hospitals and doctor groups for 60 miles all around. No lab report, no diagnosis. Period.

I am sure I have it. Have for a very long time, and not just in my eyes.
Have a bunch of other things, too, the fun stuff like fibromyalgia (took them 23 years to diagnose that one), which is also vague and un-lab-reportable. And little over a year ago, one of our lovely local doctors actually wrote "yuppie flu" in my chart.

Have an appointment with the only potentially useful rheumatologist in the area in mid-December (booked that a month ago) because I have blown 4 joints since last January, doing nothing. Last one--tore my ecu tendon in my wrist by simply lifting my hand off the couch into the air. really. tore a tendon on thin air. But, since the blood test came back barely out of normal, I have to wait nearly 4 months to see the rheumatologist, who will probably repeat the blood test and kick me to the curb. So I sit here, literally sit here, afraid to move because I don't have many working parts left and I can't risk losing any more.

I'm an hour and a half out of New York City. Three and a half from Boston. (Forget Yale, they're just a name with nothing to back it up anymore.) This neurologist is "Director of Neurology, Mount Sinai Health System at CareMount Medical" located a little bit outside NYC. But he says rather than keep going doctor to doctor and having to have them all talk to each other, I should just go to Mayo where they can test everything all at once and sit down together and figure it all out. He thinks that mg is "the low-hanging fruit" and that they'd find I have some really rare neuromuscular thing.
Told him over and over I cannot get to Mayo anytime soon. Don't have the money for airfare or hotel. Don't have anyone to go with me, and I certainly can't go alone. I get so plane sick (and that was before the major accident 7 years ago and all the complications since then) that they will probably end up taking me off the plane in a stretcher. I can't sleep in a hotel unless I find one with a good recliner, and you can't trust what they tell you, you get there and there's some rinkydink piece of worn out crap in the corner that isn't even fit to sit on, if there's actually one in your room at all. I don't see well, I don't always hear right, I have balance issues, pain issues, breathing issues, issue issues....I cannot go alone. Even if I had the money. which is going to take many many months to come up with. I have good insurance, but they don't pay for plane tickets and hotels and meals and taxis and all.

He said he could manage things, once Mayo diagnosed and made recommendations, since it would be difficult to keep going back there for treatment (ya think? it was difficult getting to you, you jerk, my husband had to take a day off work during a major company-wide project on the new computer system that goes live next week and they are nowhere near ready for. But I waited 2-1/2 months for this appointment, and there was no other choice.) But he wants someone else to do all the work, first.

I would be just fine with the 'bandaid' of mestinon so that maybe I could stay on my feet long enough to cook dinner, or vacuum the dog hair off a rug. But nope, I have to wait until I can accomplish the near-impossible of going halfway across the country and HOPE they come up with something.

I am so angry, I think mostly at myself because, while waiting the 2-1/2 months to get this appointment, I actually let myself believe that something would finally get done. Stupid, stupid, stupid.

At least anger provides a boost of energy, and I'll get that much out of this.