Looking For Autonomic/dysautonomia Clinics, Experiences?

[ashyea]

Hey guys, I'm new to this forum. Firstly, let me say how awesome to find other people with POTS! (Though it's sad we're all suffering). I've had POTS symptoms all my life as well as IBS, Migraines, possible endometriosis for ten years, and I've just now found the chronic illness community.

Now to my question. At the moment I have good insurance and am interested in going to a specialized clinic while I have it. I've been looking at Vanderbilt, Mayo, and Stanford. But I'd like to hear opinions/experiences from everywhere. I'm hoping to get a definite POTS diagnosis. Despite a positive TT as well as all the symptoms of dysautonomia (I literally have 99% of that long list of possible symptoms on this website) the most I've gotten is "autonomic dysfunction'. I'd also like to have any underlying causes ruled out. And to figure out which of my symptoms are related to POTS. Is anyone aware of a clinic that would offer that?

Thank you!

[statesof]

Hey ashyea, I've personally had some experience with Mayo clinic; my migraine specialist is there and I went through autonomic testing there as well, and had an appointment with one of the autonomic specialists. They diagnosed me with POTS based on their tilt table test and my patient history.

I would say my experience with Mayo is overall good; they are the best doctors I've been to, and over the years I've had tons of tests done up there, which is good because they many times schedule a lot of the testing in the same week you have appointments. With the autonomic specialist I had to wait 6 months to get an appointment, he was the most knowledgable Autonomic specialist I've been to, but it was more for diagnosis purposes than treatment, however he said whichever doctor that I had back home that would oversee my continued treatment, he would be willing to communicate with them about my case and diagnosis.

I don't think I'll ever find a "cause" for my POTS, and I'm still struggling to find a medication and exercise-like regiment that works and is sustainable, but many of my tests at Mayo ruled out other possible conditions and causes.

[Guest KiminOrlando]

I had a negative experience at Mayo Florida. I went to Vandy and they helped me. I am currently being treated at the Medical University of South Carolina in Charleston. 

 

[Loulou]

KiminOrlando,

Hi, which Mayo did you go to in Florida, I am considering going to Mayo in Jacksonville, but would not want to waste the time if it were not good.

[angelloz]

I have been to the Mayo in Jacksonville and the Mayo in Rochester. In my opinion the one in Rochester was MUCH better.

[DizzyGirls]

We have been to Stanford and UCSF.  Stanford was great!  We were able to see the great Dr. Jaradeh.  He was so kind and knowledgeable and the only doctor appointment that I've taken my teens to that I didn't have to educate the doctor.  It was so nice.   I feel it's a pity they just diagnose and can't follow up.  It's kind of a well-known fact.  But, that being said, I would highly recommend a one-day trip for diagnosis and testing.  Now, I have a friend's daughter who sees Dr. Muppiddi (at Stanford's Autonomic Clinic) and he is good at follow-up.  So, either one.  UCSF has a new Autonomic Clinic, but I'm not sure if they are only seeing their current patients there or if they are taking people on the outside yet.  You could call and ask.  Hope this helps!  Best wishes!

[rje11]

I went to Mayo in Rochester in December and was very impressed with them.  I also have generalized dystonia and they actually paired me with a doctor who used to be a Movement Disorder Specialist but had switched to Dystautonomia, so he was VERY knowledgeable.  Everyone was very nice and helpful there.  I ended up in the hospital with what they thought was a stroke (didn't end up being that) so I was there for two and a half weeks - longer than normal.  They can get more testing done there in 3-4 days than you can at a "regular" hospital in 6 months, though.  Highly recommend them, especially if they are in network for your insurance.  

RJE

[Cu Mom]

I would like to expand this thread if I might.  I have a diagnosis of MCAS and POTS.  I have been to University of Minnesota and seen the specialist there.  He was wonderful but what he does is the diagnosis and creates a "plan", 23 page plan!  I went back to Cincinnati to implement the plan with my PCP who is WONDERFUL.  That doc is also my migraine specialist.  The problem I am having is my PCP is just tooooooo busy and it is hard to get his attention beyond the 15 minute appointment.  Does anyone have any suggestions on how to find a day to day doctor who understands all this stuff and can act as quarterback on testing, medication trials, disability paperwork, etc.  I don't know where to even start.  I would be willing to travel so that could cover Cincinnati, Dayton, Columbus, Indianapolis, Lexington, Louisville to name the major cities around me.  My brain fog hampers my ability to be creative on my own.  Any suggestions would be greatly appreciated!!!!