Jacquie802 Posted February 22, 2006 Report Share Posted February 22, 2006 So, I just got back from my apptmt with my Neuro. He wants me to take the Florinef twice a day, everyother day, but I am going to still be taking it once a day...if that makes sense. So, on Mon, Wed, Fri, etc. I take 2 pills then on the other days I only take one. He said that if it makes me feel better to take 2 everyday.He also mentioned a Research Study they are doing at the hospital within the next 2 months for people with POTS. I think I might try it. If at the very least we can learn more about my POTS. Also, they pay people $100., I am def. not doing it for the money though, I am doing it for me and to find some answers. For the study I stay over night and the next day they do all the testing, I'm not sure what type of tests though, he did mention that they do a TTT, so this is going to me my 5th TTT!!! Anyone have any idea what other tests they may perform. Also, would you guys do the testing if offered?? Jacquie Link to comment Share on other sites More sharing options...
Ernie Posted February 22, 2006 Report Share Posted February 22, 2006 Hi,I am still willing to participate in some research protocol but it depends on the tests, what are they going to tell me and who is the investigator. Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 23, 2006 Report Share Posted February 23, 2006 Is there a website that describes the study?thanks,Katherine Link to comment Share on other sites More sharing options...
gelann Posted February 23, 2006 Report Share Posted February 23, 2006 Where is the study done? At a university? do they need more volunteers? Gelann Link to comment Share on other sites More sharing options...
Jacquie802 Posted February 23, 2006 Author Report Share Posted February 23, 2006 Hi Guys,I couldn't find any info about it online, but my neuro is going to send me info in the mail about it. It is being done at Beth Israel Deaconess Medical Center in Boston. My neuro did say that they were looking for people with POTS to do the study!Jacquie Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 23, 2006 Report Share Posted February 23, 2006 Thanks--please post more information when you get it!Katherine Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted February 23, 2006 Report Share Posted February 23, 2006 Jaquie,Please send the information privately to people who are interested in this study. For those of you who are interested in this study, please contact Jaquie privately. We don't allow recruitment for studies on our board for the following reasons:1. People may have a really awful experience when participating in the study and if they found out about it on our forum they may assume we support it or are even involved in it...and then come back to us angry. Not a good situation. 2. We have a page on our website where we advertise studies (with a proper disclaimer stating we can't gaurantee satisfaction) for doctors who agree to be our medical advisors. In this way, we can give something back to doctors who agree to help us, and we are more likely to get medical advisors as a result.I hope you can understand why we do what we do.Take care,Michelle Link to comment Share on other sites More sharing options...
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