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Jillyrbean

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  1. I went to an autonomic research facility in April 2010 and I was told to stay on all my meds as well. My referring physician didn't seem to agree with that, but I stayed on anyhow. I waited just under a year for my appointment and I was SO looking forward to being evaluated. I have a cousin with POTS and she had overwhelming success there. I was there for three weeks, which was NOT cheap, and some of the tests were grueling, but if it was going to help me get my life back, I was up for anything! Admittedly, at the time, I was obese in part due to inactivity as a result of POTS. At my final appointment where I was to receive my results and recommendations, the doctor told me that I needed to loose weight (no kidding!) and that my test were borderline for POTS but he felt that it was only because my body was deconditioned. He said I have a labile autonomic nervous system that would correct itself if I went on a diet & exercise program. Needless to say, I was frustrated, hurt, and felt incredibly hopeless. I wondered if I had dysautonomia at all! Back home, my doc (an electrophysiologist) reviewed my tests, told me it proved what he had been telling me for the past 6 years, and he apologized to me for the docs bias towards me due to my weight. I have now lost 75 pounds but cutting out processed foods and just being aware of what I put in my body. And surprise, I still have POTS! I would be to hear what " he who shall not be named" would say now! Anyway, my point is that if you go through all of that testing on your meds like I did, it's not a true portrayal of what is going on with your body. Getting into a research facility is something so many of us hope for, I would hate to see someone else take all of that time, spend all of that money, and wind up in the same place you started! If your current protocol works for you now, I would think it would work again if you decided to discontinue it while being evaluated. Just my two cents! I wish you the best of luck!
  2. I waited 13 months until I was finally able to get an appointment in Rochester. I called every six weeks or so to check on my status and they never had any answers for me. It wasn't until I was my cardiologist and gastroenterologist from UPenn to call again (their 2nd call each) that I was finally offered an appointment for the following month. I would definitely ask your referring physician to call on your behalf. I didn't see any of the doctors that other members usually list and I won't mention his name, but he was not understanding at all. He is supposedly in the Autonomic Dysfunction subspecialty group, but I would think that someone who works with this disorder on a daily basis would be a bit more understanding with his patience. Unfortunately, I wasn't given any recommendations after an 18 day visit. I was only told what NOT to do! I hope that when you finally get your appointment, you have a positive outcome.
  3. I was on the waiting list for 10 months before they called me to give me an appt date a month later. I'm actually at the Mayo right now! Today was my first day (of 10) and so far it's amazing. So, from what I've experienced so far, it was well worth the wait... I am seeing Dr. Singer and he's VERY nice and VERY thorough. He really seems to "get it." Good luck and hang in there! I know how frustrating the waiting is!
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