dianaD Posted April 20, 2006 Report Share Posted April 20, 2006 Hi everyone,I just wanted everyone to know that Mayo has a couple of POTS research studies going on right now, and I'll be headed there in a couple of weeks to go through the studies. I am grateful to this forum for discussing the studies and alerting me to them. I actually get to see Dr. Low!! And she made the appt. for 2 weeks from now (not the expected 6 months!). Yeeeehaw.One of the studies was discussed on the forum before. It involves a lot of questions about your symptoms. There were a lot of questions about swallowing difficulties, GI problems, partial paralysis, in general, a lot of questions that seem to involve what a lot of you go through, but have no answers for. It is all through Dr. Low's office in Rochester. As some of you know, I've been on minocycline and am doing better, but I can't be sure that it is the minocycline doing it. That is one thing we will be talking about, and I'll keep you guys posted on how it is going. At a minimum, I want the researchers to know that minocycline really helped the autonomic symptoms of my friend with Shy-Dragers, and the doctors now agree that it prolonged his life. And Mayo is studying minocycline with ALS right now, but they haven't looked at it with Shy-Dragers, so they were excited to hear about it (or at least the lady on the phone was excited). As horrible as we feel, after watching my friend go through Shy-Dragers, I know that THEY are the ones who REALLY have a raw deal. Quote Link to comment Share on other sites More sharing options...
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