ViewsAskew wrote:About a week ago - probably on New Year's Eve - I located the 8 doctors in my new insurance plan who are covered and who are hematologists. I discounted the ones that were over 55 - sounds mean, but so many of us have had better luck with younger docs who are more willing. I narrowed it to two and sent them both emails. The first one was intercepted by scheduling staff and it never got to the doc. They just wanted me to make an appointment. I'm not going to do that! I'll have to see what I can do to get around the staff.
But, today, I heard from the other doc. He said he wasn't clear on how it helped, but he WAS WILLING to review the literature and work with me. I can't tell you how much better I feel. He said insurance could be an issue. If any of the rest of you have had them covered, how was it coded? How did you convince the insurance to cover it? I copied Dr B on the email - I need the protocols and all the studies related to send to this doctor. Hopefully he has them for me.
I am not sure where you live. I had an iron infusion here in the Baltimore area (I can send you the docs info if you like). My hematologist was wonderful, he is very enthusiastic about iron infusion and RLS, and my insurance covered the procedure,which was less than a hour!! Unfortunately, although it raised my ferritin levels from 20 to 200 (or something like that), it did not stop my symptoms.
The other thing we have going on here is a clinical trial that I am too chicken to do, but may be perfect for you. The clinical trial team helps you wean off all meds, you have to STAY off them for 10 days, then check into the hospital for 3 days for tests and research. I could handle the 3 days in the hospital but 10 days with no meds? I would not be able to work at all. As I recall, they are also looking for "healthy" control patients and may have asked if I wanted to bring a non-RLS person with me for the hospital stay (sorry, can't remember exactly about that)
I am a little vague on the details, I spoke to one of the coordinators several months ago, but here is a link with contact information:
http://clinicaltrials.gov/ct2/show/NCT0 ... and&rank=2
I have always been compensated for travel expenses for the Allen/Earley trials but I doubt they will pay for a plane ticket But thought I would throw it out there in case you have family in the DC/Baltimore area!
Let us know when you go drug free!! I know you'll get lots of moral support from us...for what it's worth!