I'm in CT, and we did the rounds when trying to get some answers on the vascular thoracic outlet syndrome that developed after the accident/clavicle surgery a few years ago. Hit Yale, Columbia, NYU, and Mass Gen., after going through several more local places. Yale and Columbia pulled the disappearing act after passing me off to yet other departments during the visits. NYU was decent. Mass Gen had, at the time, the world guru of TOS. So we went up for 4 days. Saw him, got testing done. Then waited. Then had insurance refuse what he proposed. Then found out why they wouldn't cover it. Guru had mixed up someone else's MRI and records with all of mine, and misdiagnosed me based on that, and put her symptoms in place of mine, and therefore the insurance wouldn't cover treatment for "pain" instead of investigation for possible vascular occlusions. Forever. Insurance will never let me have those tests ever again since they reviewed twice, but based on faulty info. When I finally saw his report, and saw wheat he had done, I called him to make aware and discuss what to do. Guru said, "Well, if we did not communicate to that extent (huh? you mixed someone else's MRI in with mine, as I never had one of my neck!) then I am not the doctor for you" and he dumped me.

And, because we had a big lawsuit pending against the guy who clobbered us in the accident, my lawyer said i couldn't pursue correcting his report (as it would complicate things). So, there are pages of improper analysis on me up at Mass Gen, written by a very big name doctor there.

But, mostly, I cannot start "the chase" again. Every time I go to a new doc, I can't help but let some hope sneak in, and then BOOM, it blows up in my face. I can no longer drive, so hubby has to take time off from work, as well, and that's not a good idea right now (they've been "cost-cutting"). Four days in Boston cost us over $1100. And, the fancy hotel right next to the hospital didn't even have the decent recliner chair they promised me it would.

Most Recent Jerk is probably right. I probably should go somewhere where they can and will evaluate everything at once and put it all together, all at once. I've blown 4 joints/back since january, doing NOTHING. First appointment with local rheumatologist is mid-December. Maybe instead of 2 or 3 or 4 separate weird, rare diseases, it's all related and should have an overall treatment plan. Orthopedist for latest problem (tore wrist tendon just by moving my hand) prescribed a drug for the rheumatoid arthritis they think I have, after reading paperwork I called in to my cardiologist to check on the drug, she said No, not more than a couple uses short term, but other doc had said daily for indeterminate time (like until December when I can see rheumy). So, instead, I am doing nothing. again. until December, when I will probably get caught between the Rheum & Cardiologist, going back and forth "he said, she said" until something works out or nothing works out. I cannot start chasing again. I just can't do it. And then I would still need someone nearby to handle things for me, and do I really want to use this guy who doesn't have the brains or guts to diagnose or treat me himself, who wants someone else handing him the paper with the diagnosis on it?

Like everything else, I will just have to adapt and be careful and hope I never end up in the local ER, because they WILL kill me.