jrlehnardt Posted February 21, 2012 Report Share Posted February 21, 2012 I know there is a list of doctors tha have been helpful on thesite. but when it really comes down to it from what i have seen, to get real help, you need to go to the mayo clinic in rochester or in az. is that the case? is there other places, like the mayo in jax? i know you talk about dr grubb and goodman, are there other docs to see or mainly just them? and how long does it take to get in with them? Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 21, 2012 Report Share Posted February 21, 2012 I saw dr g in Az at mayo. He was wonderful, I had an appt a month out from my first call. I also just saw a private practice doc in VA that is a cardiologist pots specialist. He's been the best so far. He can't do the extensive testing that you get at mayo, but I think he has the best understanding of underlying pots mechanisms and he is sooooo nice. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 21, 2012 Report Share Posted February 21, 2012 I will let you know about Mayo-Jax, as that's where I just went for my first appt. I went to see an endo, though, and he is passing me off to a cardio and neuro for the POTS. I see them in April, so will update then.I called and it took me about 10 days to get in with the doctor. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 21, 2012 Report Share Posted February 21, 2012 We had better testing and more help from the doctors at Case Western University Hospital in Cleveland than we did at the Mayo Clinic in MN. The TTT done in Cleveland was 45 minutes, the one at the Mayo was 10 minutes. That being said, the doctors at Case Western were the Chelimisky's and they have since moved to Milwaukee WI. The Mayo was more streamlined, everything back to back to back so no wasted time. But they weren't treating only testing and referring us back to our local doctor. The Chelimsky's did testing and treatment. Quote Link to comment Share on other sites More sharing options...
issie Posted February 21, 2012 Report Share Posted February 21, 2012 Mayo is good for diagnostics. Many times those that come from out of town - they will refer to local docs to handle treatment. Quote Link to comment Share on other sites More sharing options...
jrlehnardt Posted February 21, 2012 Author Report Share Posted February 21, 2012 yes, i am in fort gordon, georgia. have had pots for almost 6 years but just diagnosed a year ago. i also have eds but not sure if my pots is really secondary to that as my pots started after a pregnancy and hysterectomy. so i dont know what type of pots i have. i have had the typical symptoms until recently where my symptoms are more like the hyperadrenergic. i have a family doctor that has sent me to so many specialist but when it comes down to it, my pcp is willing to learn and try anything for me whereas i dont get much help from the specialist. i have gotten so bad, even when 6 months ago ididnt think i could get any worse. so i was thinking if i got a lot of the teting done at the mayo clinic and with their advice of what to try that my family dotor could go from there. only problem is m hubby is military and it has been so difficult to see civilians and get referrals. but i think my pcp would be willing to call the mayo and then also let my insurance know at this time that i have to get further testing to get better. i just didnt know if it would be better to have him ask me to got to the az mayo or the mn, or jacksonville, since i am closer to florida, but i just hadnt heard too much about jacksonville being as helpful. and i dont know how insurance would feel about having me go to az mayo if jacksonville is closer? Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 22, 2012 Report Share Posted February 22, 2012 You're also not toooo far from Vandy and apparently they are good at diagnosis but not so good at following up with people (from what I've heard). But that might work with your situation as you describe it.There was a member on here a year or so ago who was in terrible shape and went to Vandy without receiving any help and then went to Mayo in Jacksonville where she got a new diagnosis and treatment and hasn't been back on the forum much since then. Last we heard she was doing great. So apparently the neuro's at Mayo Jachsonville are good too. Quote Link to comment Share on other sites More sharing options...
jrlehnardt Posted February 22, 2012 Author Report Share Posted February 22, 2012 Thanks. Went to a new doctor today. A cardiac electrophysiologist and without me even saying anything within the first 2 mins. He said I should go to toledo or Vanderbilt andwhen I told him how long it took to be seen, he said I should see dr Goodman. He said his last patient he sent to Dr. Grubb took 8 months and i just don't have another year to get worse and go untreated. So now I have to figure insurance out so hopefully I will be able to go soon! Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Report Share Posted February 22, 2012 Lots of us see Dr. G. It's a good place to get diagnosed. Quote Link to comment Share on other sites More sharing options...
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