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...
shannon Posted April 20, 2006 Report Share Posted April 20, 2006 Hey Diana,That's great that you are a research participant!! I think I am in the same study as you. Good luck at your appt with Dr. Low!!!Shannon Quote Link to comment Share on other sites More sharing options...
MNsue Posted April 21, 2006 Report Share Posted April 21, 2006 I am in the process of trying to get an apt at Mayo. I have really been struggling since November, and need someone to take an interest in solving my neuro and POTS issues. Thanks for the update. I will ask about Minocycline. Let's hope it is the miracle we are all waiting for. Rhonda Quote Link to comment Share on other sites More sharing options...
PattiL Posted April 21, 2006 Report Share Posted April 21, 2006 Hi Diana,I'm so happy for you that you'll be part of Mayo's study. Please keep us all posted. I sent you a private PM concerning this also.Good Luck,Patti Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted April 22, 2006 Report Share Posted April 22, 2006 Hi Diana,Wanted to wish you luck. Amber Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted April 22, 2006 Report Share Posted April 22, 2006 Good luck Diana! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted April 24, 2006 Report Share Posted April 24, 2006 YEAH!! GOOD LUCK DEAR!!!let us know how it goes and what you find out!! BIG HUGS!! Quote Link to comment Share on other sites More sharing options...
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