Yay, so glad I can finally get back on the forum. I haven't been able to access it for at least three weeks. Whew!

So here's my issue. I have a great internist here in town - love him! I also have a nephro, an ENT and a pulmo doc here locally. All very good. There is, however, no rheumy in town. When I was first diagnosed, I traveled to Spokane (about 3 hours away) to a rheumy up there. But then, on the great advice of Sangye and others here on the forum, I went to Cleveland Clinic and saw Dr. Langford. She directed my rituxan infusions and I'm SO glad I went.

BUT, my docs here are having a hard time reaching her. Both my internist and nephro tried to reach her back in Oct/Nov about some issues with my maintenance meds and after three weeks, neither one had heard from her. They both want me to go back to the rheumy in Spokane or choose another rheumy close by. I do NOT want to go back to Spokane - I was only the 6th Weggie the doc had seen and in the end, I was not comfortable at all with him or his office (after 4 requests, they NEVER sent my records to CC when I went out there!) And I'm not sure I want to go to another rheumy who is not a vasculitis specialist.

Reality is, I probably can't get back to CC more than once, maybe twice a year, due mostly to travel costs and scheduling with all my kids, not to mention our insurance pays horribly for out of network providers. And although my docs here are very willing to work with CC long distance, it doesn't seem to be working out very well. They've both told me (internist and nephro) that they're uncomfortable with no weg specialist to guide them in treatment, which I totally understand.

So I'm not sure what to do...

*keep going once a year to CC and have my docs be uncomfortable with the situation
*find a random rheumy in the NW (anybody have a suggestion - maybe Seattle or Portland area? I know there are no good ones anywhere close)
*see if I can get in to the vasculitis center in Salt Lake, which is a much more reasonable distance to travel. Plus my daughter was just accepted to college in Utah, so I'd have an excuse to visit often