delphicdragon Posted June 13, 2007 Report Share Posted June 13, 2007 Hi Everybody-I'm so happy that I found this forum. Finally, I'm realizing that there are other people out there with the same peculiar symptoms that I have. First, a little bit about myself. I'm a graduate student, about to start my PhD in BioMedical Science focusing on Bone and Collagen Biology. I have EDS, diagnosed in 2005, after a roommate with the condition urged me to go to a geneticist (how random is that!) I'm a little worried about starting the PhD as it's a lot of work- but I'm hoping I can handle it. I was diagnosed with POTS in January 2007 and have been trying to research the condition as much as I can. Unfortunately, I can't take a lot of the medications that are supposed to help (Florinef makes me blow up like a balloon ). It's good to finally have a diagnosis. I was having what appeared to be seizures for about 3 years before someone called the EMTs and they couldn't get a supine blood pressure. A group of neurologists realized that there was something wrong with me because my standing heart rate was SO fast. (I've gotten it up over 200 on occasion) About a year of testing later, I finally had a diagnosis. Thanks for being there to provide answers when the doctors all seem clueless.Sara Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted June 13, 2007 Report Share Posted June 13, 2007 Hey Sara!Welcome!!! I havent been a member all too long, a little less than a month i think. But i have found it to be a great help in coping!!! Glad you finally got your diagnosis, its such a pain to be left in the dark. Welcome, hope you have a nice day!!Mary Quote Link to comment Share on other sites More sharing options...
P SUDIK Posted June 13, 2007 Report Share Posted June 13, 2007 Hello Sara,just want to say hi and welcome,Good Luck with school. Pat Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 13, 2007 Report Share Posted June 13, 2007 Hi Sara,Welcome to the forum! I hope you find this to be a helpful and informative place.I hope that all goes well for you as you get your PhD! That's exciting!Rachel Quote Link to comment Share on other sites More sharing options...
nadine Posted June 13, 2007 Report Share Posted June 13, 2007 Just wanted to welcome you!Good luck with your studies. You may want to think about asking for accomodations from your disabilities offfice at your school, if needed. They can be very helpful and the sooner the better, now that you have diagnosis. Perhaps, you will help many others someday with your science studies!!! Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted June 13, 2007 Author Report Share Posted June 13, 2007 Thanks for the good wishes, Nadine. I've all ready asked for accommodations with disability services and they have been wonderful. The reason why I am studying Bone and Collagen disorders is because of my Ehlers-Danlos, I want to know what mutation those with Hypermobility Type EDS have and if anything can be done to help those of us with it (There's no good mouse disease model as of yet).Sara Quote Link to comment Share on other sites More sharing options...
flop Posted June 13, 2007 Report Share Posted June 13, 2007 Hi Sara,welcome to the group. As you've already seen we're a friendly bunch and always ready to offer support.Your PhD research sounds interesting and could prove valuable to some of the members in the future. I'm not aware of any "official" connection but there does appear to be at least an anecdotal connection between EDS and POTS. There are quite a few members on the board with EDS and many of them type 3 / Hypermobility.Flop Quote Link to comment Share on other sites More sharing options...
Lauren78 Posted June 13, 2007 Report Share Posted June 13, 2007 Hi Sara and welcome! I have only been on here for about 2 days, but have already found it a tremendous help and everyone is really nice. Wow, that is quite a vigorous study you have planned for yourself. I think that is great! I too am a student, but not in such a science-minded field. I am in school for dental assisting and then plan to go onto hygiene. Good luck on your Ph.D.! I am sure your research will help many others in the years to come!And you're right, it feels so good to have a diagnosis. I think not knowing what is wrong makes it that much more unbearable.Anyway...welcome!Lauren Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 14, 2007 Report Share Posted June 14, 2007 Welcome! So glad to know that someone plans to spend a career studying a condition about which so little is understood.I think you will find great information and support here.Katherine Quote Link to comment Share on other sites More sharing options...
AJVDK Posted June 14, 2007 Report Share Posted June 14, 2007 Sara,I wanted to drop a line and say welcome to the forum, I am gald you found us. When I first found out I had POTS I was finally happy I was able to have a name for eveything going on, the down side was that I never heard of it or had any of my family. I was so happy when I foud this site 2 years ago. It has been a saving grace for me to know others form here, and even made great friends. THe support I have found here has been great.I hope you find a treatment that will work for you, so that you will be able to follow your dream, and not have to slow down! Thanks for sharing with us! Quote Link to comment Share on other sites More sharing options...
corina Posted June 14, 2007 Report Share Posted June 14, 2007 hi sara,have not much more to add, just that i'm glad you found this forum. there is a lot of information on it and there are a lot of supportive fellow "potsies" (as i call them, but i mean people with any kind of dysautonomia) around, to help you answer your questions!corina Quote Link to comment Share on other sites More sharing options...
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