Michelle F. Posted July 2, 2008 Report Share Posted July 2, 2008 I have been with a neuro for the past 2 years who seems to be learning about dysautonomia with me as patient. He is sharp, but I think I need someone who sees this all the time. I have a history of MVP, but I had an ekg two years ago and they didn't see it. I had a TTT a week ago and saw a cardiologist very briefly, but I don't plan to ever see her again. (if interested, see my other thread). Because I passed out on the table and my heart rate and bp both went so low, I know I need to see a cardiologist. I also have intermittent chest pain I want to check on. But, I am also thinking I need a more experienced/knowledgeable neuro to give me proper dx and direction. I am thinking of going to a cardio (Moore) at the MVP Center in Birmingham (less than 2 hours from me) and then also trying to go to a neuro at Mayo in Rochester (Low or Sandroni). I don't want to see too many doctors, but I want to try to see the right ones. After the one TTT, I also don't want to repeat too many tests....for financial reasons and just the experience of it.Any input welcome. If you have any experience with either of these centers or any of these doctors, I'd love to know. Thank you!Michelle Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 5, 2008 Report Share Posted July 5, 2008 I've never been to either place, but I have heard good things. If the MVP Center in Birmingham is so close to you, I'd recommend going there before you try Mayo. From what I hear they are very familiar with treating dysautonomia. You would probably get a proper diagnosis and the right meds to try. And it would save the time and expense of going to Mayo. Follow-up care would probably be better at the MVP Center also.Rachel Quote Link to comment Share on other sites More sharing options...
masumeh Posted July 6, 2008 Report Share Posted July 6, 2008 Echoing back here...but go with that gut feeling...No offense to your "willing to learn" neuro, but it is best for you to be treated by an experienced doctor, I mean experienced with POTS. It really makes all the difference. Quote Link to comment Share on other sites More sharing options...
Michelle F. Posted July 9, 2008 Author Report Share Posted July 9, 2008 Thank you for the responses. I am scheduled with the MVP Center in Birmingham for August 7. I'll follow my gut (which I needed the reminder for ) after that. Michelle F. Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 9, 2008 Report Share Posted July 9, 2008 I hope everything goes well for you. Please let us know!Rachel Quote Link to comment Share on other sites More sharing options...
mom4cem Posted July 11, 2008 Report Share Posted July 11, 2008 Dr. Moore, lovely Dr. from all the others I know who have seen her. I was seeing another dr. there for years until she retired and then I last saw a Dr. Phillips I think was her name, that was several years ago. They a dysautonmic center and can do many tests there, (and also if you bring recent tests, like echo/stress test etc, they may not have to repeat). That is where I finally received acknowledgement that what I was feeling was real, not all in my head and a ton of information for me to take back with me and a medication regime which really did help. I finally had a name for it and information about it. Unfortuntately for me it is over 11 hours away for me so I could not make the trip down there often, and it's been several years since my last visit, but if I ever have any questions, all I have to do is e-mail them and they will help me the best they can with answers. I never thought I would have to look to a place hours and hours away when I live in NY where you would think with all the hospitals etc, that someone would know something!Good luck! Quote Link to comment Share on other sites More sharing options...
Michelle F. Posted July 11, 2008 Author Report Share Posted July 11, 2008 mom4cen- Thank you. I just received the packet of information from the Center in Birmingham and started second-guessing my decision to go. I guess I was remembering my last poor experience with a cardiologist and didn't want to go through that again. Your have encouraged me with your words and by sharing your experience with this particular office. Thank you! Quote Link to comment Share on other sites More sharing options...
momofsara Posted July 12, 2008 Report Share Posted July 12, 2008 Michelle, I will be anxiously awaiting your opinion of the MVP center in Bham. Have considered taking Sara there, but its complicated when you have Medicaid and limited resources. But if you have a positive reaction to the center, I will look further into it. The only person I have known who went there, used them for a while but stopped going. I think she felt that she was not being helped(???) So keep us updated. Best to you--Susan Quote Link to comment Share on other sites More sharing options...
momofsara Posted July 12, 2008 Report Share Posted July 12, 2008 LOL---sorry about the sick icon---accident i assure you--susan Quote Link to comment Share on other sites More sharing options...
Michelle F. Posted July 12, 2008 Author Report Share Posted July 12, 2008 Susan- I will be sure to post my experience and hope it helps! Michelle F. Quote Link to comment Share on other sites More sharing options...
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