I have a decent cardiologist, so no POTS. The slight dizzy thing started well over a decade ago (maybe 12-13 years ago?), the joint self-destruction just two and a half ago. As far as Ehlers Dansos, no one has mentioned it or looked into it. My bloodwork is fine. Around here, when your bloodwork is fine, you are fine. Seriously, if there is nothing wrong with your bloodwork, the office has a nurse call you and tell you that your bloodwork is fine. Period. If you ask, what about my symptoms/pain/problems/etc, if you have a good nurse, she says, oh? are you still having symptoms? you can make another appointment if you want.... If you don't have the good nurse, you get, the doctor just told me to tell you your bloodwork is fine.

Went back to my gp last week, since one of the specialists he sent me to was actually a human being, but what he usually does didn't help at all (physiatrist who believes in supplements and pt) and so that doc had called and talked to the gp, who was supposed to call me, but didn't, until I followed up and got the oh? you are still having symptoms? you can make an appointment....

GP told me that I was beyond his expertise and that's why he kept sending me out to specialists. Only, all they do is read your test results. AND...if doc sends you to specialist saying, tell me if it's mg, the specialist will only decide yes or no. period. doc sends you out saying, tell me if it's rheumatoid arthritis, specialist looks at bloodwork for RA only, (up to 38% of people don't test positive for several years, during which joint damage occurs) and says no. (my fingers are now starting to go crooked, so bloodwork or not, maaaayyyybeeee....only they booked the next available appointment, for December 24th. Four months wait. Which is better than trying for an endocrinologist around here--7 months or more for them.) Ankle doctor said he thinks I have synovial inflammation, but without a positive bloodtest or a big swollen ankle he can stick a needle into to sample fluid and get a positive test, no diagnosis, no treatment. Which would fall under the rheumatologists, but they were only asked about RA and so won't look for anything else unless I go back with a new referral for a new potential disease and then they will evaluate for that one only, but my bloodwork is always fine. And my gp made it very clear he doesn't want to see me for any of this difficult stuff anymore.

I don't even HAVE mg. No positive bloodtest, no positive emg (which I now understand is possibly because the room was freezing cold, so cold that even under the blanket they gave me, I was cold.) So no one will diagnose it. Pyridostigmine works. IT WORKS. All the symptoms fit. But their little computer system doesn't have a box to click for "seronegative mg", so I have nothing in my records indicating that I have MG or that I potentially have MG. And the last few weeks, muscle weakness is getting worse, eyes are getting worse, and breathing is getting harder. I am getting worried. And when I end up in our little local ER, they will kill me. Pretty good chance of them doing that to any patient, anyway, let alone someone unique and hypersensitive like me.

In a year, we are moving to Charlotte, NC. Hoping for better doctors there. In 5 years, last kid is out of college and I can save up to go to the Mayo clinic or Cleveland clinic. Just gotta make it until then.