I'm also still very frustrated with the medical services supply system, not knowing enough about this dragon.
Doctors have become "dispensers of cures", which means meds. That they (both the doctors and PT's) don't know, care or have time enough, or get paid enough to find out and instruct especially any "newly diagnosed" patients on how to care for themselves and what to watch for, is infuriating.

We look to our doctors often as if they're little gods and they're not.
Has anyone gotten their meds from a pharmacy like Rite Aid, and their computer gives you a print out on the medicine? What to expect, watch for, avoid?

I'll bet someone, somewhere is working on something like that, for dx's. I know that would be difficult, which is why we don't have it yet, but maybe someday. A doctor just can't afford the time it takes (for ins. payments) to give the kind of service this sort of complicated diagnoses takes.

New Health Care?
We ought to have, and the doctors should have "difficult DX" classes of something like RSD, or TOS, as compared to a more simple , common type thing.
Diagnoses, can often be (in any service type business) the more costly thing, even more than the repair, (I speak of mechanical things).
And, something like rsd, well, you know.

There are too many "cracks" in the system, that so many people (I was one) fall through. I thank God for some of my luck, not that I got this, but for having good insurance, and Finally, finding good doctors!

Life is up and down, and it has "weather". Sometimes it really can be stormy. Sometimes it can be a sunny day. And, usually after the storm, comes the sun.
After the dark, comes the light.

Sometimes we need to step back, and realize that our doctor, "is not for us". Rather than blame ourselves, and or the disease. Just as I said a re-eval on our meds is in good order occasionally.

Hope this finds all well as can be!

Pete