Are you able to get to a teaching hospital? That has made a huge difference for me because they are used to getting people who have unusual problems. I went to that hospital when my pdoc left private practice and went there so I've not had a lot of contact with other doctors there unless i was IP but when I have they've always been ready to be creative and find things that work. They also tend to be more up to date on the latest and greatest ideas. Even IP they've been very willing to listen, to consult my pdoc, and to be creative with solutions for me. I have a long trip to get there but it is 100% worth it. You still have to be willing to work with them and do as they say but it seems like the quality of care is greater than I've seen elsewhere (excluding my current pdoc when she was in private practice. Just to show how educated these teaching hospital drs are, she's a pharmacist and a pdoc so she knows everything about meds. I've been so hard to treat that both have frequently come into play. She also always has time for me, 60-75 minutes minimum, 2.5 hours the longest I've ever seen her, every month). It really helps.