toomanyproblems Posted February 15, 2019 Report Share Posted February 15, 2019 I know this topic has come up a bunch in the past, once even by me I think, but the docs come and go. I think I'd like to revisit going to one of these places if it's going to be worthwhile. Specifically, I'd like to have my dysautonomia looked at as a whole, including the POTS, gastroparesis, lack of temperature control and general autonomic nervous system failure, maybe even the Elher's-Danlos aspect. I have individual diagnoses. I'd like someone to look at the entire picture and offer any advice or treatment plan. I would hopefully like to not spend time and money being re-diagnosed or undiagnosed for things I already know I have. It seems like most of these places are heavy on the diagnosis and and light on the treatment part other than the run of the mill suggestions and drugs. What are people's recent experiences? I hope there are some new ones to share. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 15, 2019 Report Share Posted February 15, 2019 I personally have went to Vanderbilt in Tennessee and to UTMC ( Dr Grubb ) in Toledo, Ohio. Dr Grubb is superb but has a very long wait list. Vanderbilt is quicker but you don't have a choice of who you see, at least I did not. Quote Link to comment Share on other sites More sharing options...
p8d Posted February 15, 2019 Report Share Posted February 15, 2019 I love my Drs in the autonomic lab at Aurora Clinic in Grafton, WI. It’s not one of the big name places but the neurologist especially, Dr Dotson and her team look at the whole picture, every visit. I go every 3 months, I get ortho vitals and a lengthy questionnaire on every possible symptom. I hear back from them in at most 48 hours and frequently the same day to messages or calls. They don’t diagnose or treat EDS but know about it. They do extensive testing, Dr Dotson worked at Mayo for many years so you get the same tests as there. Her NPs are fantastic, I get hour long appointments and I don’t get to leave until all my questions are answered. I don’t know if you would have to be retested, some places make you. I saw a gastroenterologist they referred me to and she literally saved my life. They stat up on the latest treatments, IVIG/SCIG etc. You could call (pm me) and ask for a second opinion from them. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted February 15, 2019 Report Share Posted February 15, 2019 It’s been awhile since I went to Vandy, but I believe they only schedule you for the autonomic clinic and not necessarily other clinics at the same time. If you want to look at the whole picture with a bunch of specialists at once, I think Mayo does that more than Vandy would. Quote Link to comment Share on other sites More sharing options...
Outaker Posted February 19, 2019 Report Share Posted February 19, 2019 I hear stanford is the best. Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted February 20, 2019 Author Report Share Posted February 20, 2019 Thank you all so much for your comments. I will look into all of them. It's such an investment of time, energy and money and I want to make a good choice, Quote Link to comment Share on other sites More sharing options...
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