derekliz Posted October 7, 2011 Report Share Posted October 7, 2011 I was talking to my pediatrician who has a 13 year old POTS patient and know exactly what POTS is.....I was so surprised....maybe she knows more because she is a nurse practitioner Anyway, she gave me the name of the pediatric specialist that she uses, Dr. McConnell at Sibley Heart. I contacted their office via email and they gave me 2 names of MD's to contact.One of them, I have seen his name on this forum....Dr. Angel Leon (EMORY) 404-686-2504. Called the office and he is an electrophysiologist and does require a physicians referral to see him including office notes. He would then refer to a cardiologist in the group for treatment.I left a message for the nurse with Dr. Stephen Prater (Piedmont) 404-851-5400 and specifically asked if they treat POTS/MVP disorder and Dysautonomia. Will update when I hear back from themWould love to hear feedback if anyone has seen either of these physicians or anyone else in Georgia for that matter.Liz Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 9, 2011 Report Share Posted October 9, 2011 I'm in GA, but have no information regarding these docs, NOR do I have a good ANS doc in this state. Sorry. Julie Quote Link to comment Share on other sites More sharing options...
derekliz Posted October 9, 2011 Author Report Share Posted October 9, 2011 If you don't mind me asking......who do you see? Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 9, 2011 Report Share Posted October 9, 2011 Well, my allergist (formerly from Mayo) seems to manage most of my ANS stuff. I'm complicated Aren't we all? I don't have any allergies, BUT my ANS symptoms seem to be mediated by overly reactive mast cells (MCAD.) My treatment mostly consists of combinations of antihistamines. I did see a mast cell specialist at Brigham & Women's for my DX. Have you figured out WHAT'S behind your POTS yet? That sometimes determines who your primary doc will be? Julie Quote Link to comment Share on other sites More sharing options...
derekliz Posted October 9, 2011 Author Report Share Posted October 9, 2011 We are still trying to figure out what's behind my POTS.....so far everything is negative. Have some lab results that are do back on Monday or Tuesday of this week so maybe some answers.I really liked the MVP / Dysautonomia clinic but they really do not look for any causes from what I understand.....I am going to discuss that in depth with them at my next appt. on Nov 4th Quote Link to comment Share on other sites More sharing options...
derekliz Posted October 10, 2011 Author Report Share Posted October 10, 2011 Is there a list somewhere of "Things" that could be causing or has caused my POTS that I could refer to.....even a list of tests would be helpful I am so lost and with dr's that have no clue that makes it a million times worse!!!! Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 11, 2011 Report Share Posted October 11, 2011 Hi Liz,I actually stumbled across MCAD on the DINET website right here. There is a section entitled CAUSES: http://www.dinet.org/what_causes_pots.htmI began researching each one until I found one that best fit with my symptoms. No one cares as much about your health and getting better than YOU do. Many of us are amateur diagnosticians and have stumbled upon the causes of our illness and best treatment plans Research and ask questions. The folks here are amazing about sharing what they've learned. All the best-Julie Quote Link to comment Share on other sites More sharing options...
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