North Carolina

  • North Carolina POTSies may post discussions here about doctors, support groups, etc. Please be respectful to others, as well as careful with the information you reveal on an online forum.



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  • Hello all! I was finally diagnosed with POTS as well as ME ("CFS") and Fibro by Dr. Laura Black and Dr. Charles Lapp at Hunter-Hopkins in Charlotte a few years ago. I first started having POTS episodes at 14-15 years old, and I am now 35. 20 years to get a diagnosis is 20 years too long! If anyone here knows of a good neurologist in the area who treats POTS, please let me know. Also, I would be very interested to know what treatments people are having success with. Right now, they have me on water and salt tablets with fludrocortisone and pindolol, a beta-blocker as well as other things for the M.E. etc. I am mostly bedridden and house-bound and on disability and Medicare. I used to be a competitive athlete and a successful professional in the biomedical sciences. This has wrecked my life and I am trying to figure out how to make life work with what I have left. I would love to hear from anyone going through related experiences. I am in the Durham, NC area. Love to all- take care and be well! -Amy

  • Hi Amy, I am sorry to hear that you are having such a difficult time. I was diagnosed about 2 1/2 years ago and I was lucky enough to get diagnosed pretty quickly. I had just turned 40 so I haven't been dealing with this near as long as you. I just saw a neurologist for the first time on this past thursday. I am not able to give you an information as of yet but I can say that he does have other POTS patients and he may be able to help you. His name is Dr. Allen Collins at Duke. I also have a wonderful Cardiologist at Duke named Dr. Ruth Greenfield. I was wondering however, if you have ever thought about going to Vanderbilt in TN. It is sort of the Mecca for POTS patients. I went last year and it was well worth the trip. It takes a long time to get an appt but they left no stone unturned as far as tests and answers go. As you know this disease is different for everybody, so I won't bore you with the details but they were fantastic and if you can find a way to go I would suggest it. I live in Louisburg NC about 45 min from Durham. I would love to be able to talk more to others that live in the area for support. It is very hard to find people to talk to that understand what we go through. Be well! Shannon

  • Anyone from NC still on here? :)