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[quote=Anonymous][quote=Anonymous]I see Dr Pocinki and love him, but there are a few downsides. First, he's not technically taking new patients. I tried a while back (year or two ago), and his office staff shut me down com[/quote]

Sorry, phone hiccup! That should be "completely." Didn't even say "call back in a few months;" they said that would be useless because he is so overbooked. His name came up again this year, and my extremely helpful primary care doc offered to email him and beg. That worked, but it takes a doctor willing to intercede, and no guarantees. He doesn't take insurance. And once you have a diagnosis, he may or may not be able to do much for you depending on your issues. I may be wrong here, but I suspect his strongest area is the autonomic disruptions and sleep issues in EDS (if you've got sleep problems, definitely google "Alan Pocinki sleep EDS" for one of his powerpoints) -- for joint issues, eg, you'll just end up going to a physical therapist or rheumatologist. Plus, some other doctors won't consider his diagnosis a "real" one because it's based on observation and history rather than genetic testing.

My issues are firmly in the sleep and orthostatic intolerance camp -- I'd take joint pain forever if this crushing fatigue would go away -- so he's the perfect doctor for me right now and I'm still holding out hope for life-saving changes. Don't want the above to sound like I don't like him! Just wanted you to have all possible info for your decision. [/quote]

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