GApotsie Posted February 11, 2011 Report Share Posted February 11, 2011 Are any of you being treated by a specialist in Georgia? I live in Georgia and have been seen by the Director of Electrophysiology at Emory, but I am curious about other doctors who specialize in Autonomic Dysfunctions. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 11, 2011 Report Share Posted February 11, 2011 If you find someone, let us know. I see a cardiologist in Smyrna, but I can't say much more than he "knows" about POTS and that is the best I've gotten. I have not found anyone who is willing or interested in really treating it. One of the major cardiology groups in town has two docs (EPs) who will diagnose, but none of the other 83 cardiologists will treat it (and one of them in particular will screw you up!)PM me. Quote Link to comment Share on other sites More sharing options...
ken870 Posted February 11, 2011 Report Share Posted February 11, 2011 i also live in Georgia and like firewatcher have only found doctors that know about pots but dont know how to treat it that is why my doctors are sending me to minnesotas mayo clinic and i will be going there on feburary the 21st so everybody pray that they will help me. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 11, 2011 Report Share Posted February 11, 2011 Ken, can I ask why you don't just go to Vanderbilt, as they are so close to you? Do you think Mayo is the better choice? Quote Link to comment Share on other sites More sharing options...
GApotsie Posted February 11, 2011 Author Report Share Posted February 11, 2011 Anyone been to Mayo in Florida? My cardiologist suggested we start at Emory, and if we don't get results, perhaps Mayo.I am so discouraged at this point. I am trying to educate myself so I know what to ask and what to look for in a physician. I don't know if the EP (DeLurgio) at Emory really "treats" or just diagnoses. He seemed to be knowledgeable, but then again, I was comparing him to the doctors around my hometown in south GA. Both my neurologist and cardiologist said from the beginning that they believed it was an autonomic dysfunction, but they do not have experience with treating them. It was a relief that they seem to have been on the right track, but I don't know if Emory is going to be a dead end at this point. At my next appt in March, I am going to have specific questions ready, and I am going to ask for referrals elsewhere if they don't think they can treat me.I am just frustrated! I want my life back. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 11, 2011 Report Share Posted February 11, 2011 Because you have just started on your road to a diagnosis, I'm give you some unasked for advice that I wish I had had.GET COPIES OF EVERYTHING!!! Tests, bloodwork, doctors letters, all of it.Keep these all together and organized.Make copies for the next doc and make sure you get it all back!Keep a log starting now of symptoms, meds, dosages and what they do to you.Take it all with you when you go to your appointments.Good luck! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 11, 2011 Report Share Posted February 11, 2011 Well, now I am interested to hear about Mayo in Florida, also. I looked on a map, and it is maybe a 11-12 hour drive for me. I cannot fly, so Minn. Mayo is out. Quote Link to comment Share on other sites More sharing options...
ken870 Posted February 11, 2011 Report Share Posted February 11, 2011 Well, now I am interested to hear about Mayo in Florida, also. I looked on a map, and it is maybe a 11-12 hour drive for me. I cannot fly, so Minn. Mayo is out.Sue i did go to vanderbilt and they told me they could only diagnose me so my doctor then said it would be best for me to go to minnesotas mayo clinic because she knew that they would treat me and they had the best autonomic department in the world. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted February 11, 2011 Report Share Posted February 11, 2011 Hi....there is a POTS specialist EP doctor in Pensacola, Florida that has rave reviews. At the end of this month, God willing, I have a trip planned to the Mayo Clinic in Jacksonville, FL with Dr. Cheshire. He is the only doctor that deals with dysautonomia in the whole state that I can find and that any of my doctors know about. When I set the appointment up, they have me seeing him the first day I come and the same day, I have all of the autonomic testing set as well. They set it all up for me without talking to my doctor. I'll be sure to post something after it's all said and done. Quote Link to comment Share on other sites More sharing options...
nelgkel Posted February 11, 2011 Report Share Posted February 11, 2011 Hello, I do not know of any drs in GA because I live in FL, but I was diagnosed by my local dr who said "I can diagnose this, but not treat it" So after much research I found that DR Kusumoto at the Mayo clinic in Jax treats POTS . He is AWESOME!! I was diagnosed in April of 2009 and after seeing Dr Kusumoto and having two EP studies they found 5 arrythmias, which dr Kusumoto believes were making my POTS symptoms worse. They did improve a LOT after the ablations, but the last few months my symptoms have been returning. I have been extremely happy with the care I have received from Dr Kusumoto and his staff! If you are only a few hours from the Mayo clinic in Jax it is most definitely worth the drive. I drive over 3 hours to see him and it is well worth it!! I will most likely be going back for another EP study in the next 3 months.Praying you find some anwers.BLessings from FL Quote Link to comment Share on other sites More sharing options...
GApotsie Posted February 11, 2011 Author Report Share Posted February 11, 2011 I am going to check into Mayo after my next Emory appt. I am actually closer to JAX than ATL. THanks for the info - you know, that is the Dr. my cardiologist actually mentioned at Mayo; he must be known for his work!! Quote Link to comment Share on other sites More sharing options...
nelgkel Posted February 11, 2011 Report Share Posted February 11, 2011 I am going to check into Mayo after my next Emory appt. I am actually closer to JAX than ATL. THanks for the info - you know, that is the Dr. my cardiologist actually mentioned at Mayo; he must be known for his work!!I hope you get some insight and direction from the Emory appt. My best friend lives in GA. We LOVE it up there!! Glad to hear that your cardiologist recommended Dr. Kusumoto. He really has been amazing!! When I first started seeing him he wanted me to get off all of the meds my local cardiologist had me on and when I was ready to do that Dr. Kusumoto said to call him and he would call me back with instructions...and you know what?? HE called! not the nurse or secretary! Every time he has said he would call he has!! My last ablation he did the study and had treated 2 areas in the heart, had just pulled out the catheters and my heart went into arrythmia again! He was shocked because I was in a sedated state..he prepped me and treated that arrythmia THEN let came out and talked to my hubby and told my hubby he was going to sit behind the glass partition in the procedure room for 2 hours to make sure nothing else popped up before they pulled everything out!! He has called me at home to check on me after procedures...I stayed in the hospital overnight with both ablations..the first ablation I was his only patient because I was such a complex case. I had Ventricular tachycardia with AV and SA nodal reentry tachycardia.He is very compassionate, caring and knowledgeable.Please let me know if you do go to see him.Many blessings from sunny FL Quote Link to comment Share on other sites More sharing options...
ken870 Posted February 12, 2011 Report Share Posted February 12, 2011 i thought about going to mayo in florida but my doctor told me that if i need help with pots that minnesota was better because they had one of the best autonomic centers and the best autonomic doctors like doctor Low who was the doctor that first gave pots its name when nobody else knew what it was. Quote Link to comment Share on other sites More sharing options...
GApotsie Posted February 12, 2011 Author Report Share Posted February 12, 2011 I am new to this, but I am willing to go anywhere and do whatever to find results. I am interested to hear about your visit. I am willing to travel wherever...my husband is like, "Let's go..." Quote Link to comment Share on other sites More sharing options...
nelgkel Posted February 13, 2011 Report Share Posted February 13, 2011 http://thedysautonomiaconnection.org/physician-list/ this has a Georgia dr listed... Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 13, 2011 Report Share Posted February 13, 2011 http://thedysautonomiaconnection.org/physician-list/ this has a Georgia dr listed...This is my doctor. He's a nice guy, but he's not one for trying things. He will monitor, listen and then tell me not to worry about "it," whatever "it" is. But at least he knows about POTS. I'd use another doc if I could find one. Quote Link to comment Share on other sites More sharing options...
Deenabee Posted March 24, 2018 Report Share Posted March 24, 2018 I have been living with ANS for the last 8-1/2 years. Â My cardiologist in Philadelphia is one of the forerunning researchers in ANS conditions so he has remained my Cardiologist overseeing all care. Â My condition has recently declined into one of the chronic ANS conditions and I should have a doctor here to advise. Â Emory now has a new ANS unit which my cardiologist in Philadelphia has been a consultant on. Â I found that up until Emory ventured out into this area that there has been little awareness both medically and socially on ANS conditions. Â I am actively seeking doctors who are knowledgeable and experienced in the Atlanta area for ANS issues both in Cardiology and Neurology. Â I will share more as I find it. Â Quote Link to comment Share on other sites More sharing options...
Nhack1987 Posted June 21, 2022 Report Share Posted June 21, 2022 Hi! I live here in West Ga and I have finally had Success with finding a fantastic Cardiologist, Geneticist, and Allergist! If anyone needs recommendations I would be happy to share! But I am in need of a Neurologist to add to our team and I can’t find one.. Does anyone know one that doesn’t just automatically assume it’s depression or it’s all in your head… ?? Quote Link to comment Share on other sites More sharing options...
Lovey Posted February 14, 2023 Report Share Posted February 14, 2023 Hi Nhack1987, would you mind sharing the team you've found? Quote Link to comment Share on other sites More sharing options...
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