Hansybonanza Posted February 20, 2013 Report Share Posted February 20, 2013 Hi all, I have been recently diagnosed with pots and per my doctors referral am seeking treatment at the Mayo Clinic in Rochester Minnesota. I know people have posted about this in the past but was hoping for some new insight as to people's experiences with mayo. I leave on Saturday and am not looking forward to the plethora of testing they have planned for me but am really hoping for some answers and/or guidance. Any experiences or suggestions regarding the Mayo clinic would be greatly suggested. Also, may suggestions for things to do/see/eat in Rochester would be greatly appreciated! Thanks! Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 20, 2013 Report Share Posted February 20, 2013 It runs like clock work there. My son was in the pediatric division, so can't compare with the adult side. I wasn't impressed with the TTT they did there. It was only 10 minutes and manually monitored his BP and HR. When he had a TTT done in Cleveland, it was 45 minutes and he was hooked to machines that monitored his BP and HR and put it all on a print out. His testing was done early one afternoon so we headed up to the Mall of America. It was about an hour and a half drive from there.Good Luck,Christy Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 21, 2013 Report Share Posted February 21, 2013 Hi,I was just at Mayo in Rochester in January for autonomic nervous system testing. I was amazed by how many doctors I saw and how many tests were run in the 4 days that I was there. I agree that the TTT test was only a 10 minute test but I didn't know it was supposed to be any different.The only doctor that I didn't care for there was the gastroenterologist who just seemed completely uninterested in me and quite frankly I felt it was a waste of time.I was diagnosed with a hyperadrenergic state which my GP says is the same thing as hyper pots. They are treating me with clonidine at the moment and we are looking into mast cell disorders as well as EDS as a possible underlying issue since I have autoimmune issues.You must go to Newt's for a burger!! It was recommended by a friend who had gone to Mayo and I'm so glad that we went. On our last day we walked through the underground walk way (we had used it only back and forth from the hotel to the hospital and didn't realize how much great stuff was there!) and we were so surprised by all the great shops and restaurants in there! Good luck and I hope they help you find a great treatment plan! Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 21, 2013 Report Share Posted February 21, 2013 Took my son there and he was diagnoised with POTS. However, we don't live in that state and didn't get much help afterwards. They did not look for any underlying causes either. Our cardiologist even sent a letter with his concerns to the doctor. Hope it works out better for you. Quote Link to comment Share on other sites More sharing options...
mully2014 Posted February 21, 2013 Report Share Posted February 21, 2013 Wow that is an insanely short TTT. I've had two and they were about 30mins and 45mins each! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 21, 2013 Report Share Posted February 21, 2013 Looneymom I had the same experience. Kind of feel abandoned. Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted February 22, 2013 Report Share Posted February 22, 2013 The great thing is all of the buildings are connected via skyway and a subway system so you won't have to go out and freeze in the lovely winter weather. There are some pretty yummy restaurants downtown. A few that are really close to the clinic are Chester's, Pescara, City Cafe, and Sontes. One that's not right next to the clinic but is close is called Twigs. It is one of me and my hubby's favorites. I work at the clinic and live nearby, so if you have any questions in particular, hit me up! Good luck with your appointments!! I hope you can find some answers. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2013 Report Share Posted February 22, 2013 I read some worrying articles coming out of this team suggestting that persistance of symptoms in POTS is due to psychological factors. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 22, 2013 Report Share Posted February 22, 2013 The doctor I saw reassured me that wasnt the case. I specifically asked him if it was possible that I was causing this state. Quote Link to comment Share on other sites More sharing options...
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