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Where is best in the states for POTS?

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Ok, just say, hypothetically, I could come to the states and see a specialist.

Who would I see?

where would I see them?

Bearing in mind I'm british...how much $$ are we talking?

Any ansewrs gratefully received...there seem to be no answers waiting for me i nthis country B) so I'll have to start thinking outside the box, eh guys? :)

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In my opinion Dr. Grubb is the best Dr. in the world for this illness. People actually see him from all over the world. He is the most intelligent, knowledgeable, compassionate, sympathetic DOCTOR I've ever met. If it wasn't for Dr. Grubb I would?ve lost everything do to inability to care for myself. I was ready to sell my house, give up my kids and concede to the bed.

As for cost, I really have no idea but you could call his office.

I don?t know if he?s taking new patients and if he is expect a wait of about a year to get in, I think was the last I heard.

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Best is a relative thing. For me, if I were to compare all the doctors I've had contact with so far in my life, I'd be hard pressed to find one who compares with Dr. Grubb. Granted, there wasn't much new that he told me about my illness, but he did help me with getting meds that work. So from my relative world view, I'd answer Dr. Grubb.

If you do come to the States, you'll want to make sure you've got all your records, test reports, etc. to streamline your process. Call ahead to whatever doctor you will see to make sure if there are tests they want you to have BEFORE you go, or if you can get them done while here.


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I truly feel Dr Grubb would be well worth your visit here, his knowledge is like no other in my opinion.... I think I would of travelled out of the country to see him if he was not in the US.

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Dr. Grubb is accepting new patients, because I just got an appointment with him. If you schedule now it will be Jan/Feb for an appointment. They want you to have a doctor's referral so even a primary can refer you. But they have to call. That might be hard from UK - maybe you could call them and ask about what they would require for you to go? His # is on the potsplace website under physicians.

Then there is Vanderbilt - you can read Sunfish's expereince there - it's research. There's Mayo with Dr. Low who is hard to get into, but you might give that a try. Go to the Mayo clinic website and go to Neurology and then he's listed under specialists and there's pages that tell about referrals with phone numbers etc.

There's also Dr. Faoud at Cleveland Clinic. You could do a search here on her and read a few things.

I've been researching this too so that's why I have all this info right now. After looking at it all, I am going with Dr. Grubb and still considering Vanderbilt if they accept me - though I'm not sure I'm up to that two week stay thing.

Good luck.


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Pers -

i can't imagine your frustration. i know how i've been at wits end & ready & willing to go anywhere for some help but fortunately haven't had to cross any borders....

i would agree with all the dr. grubb is the best individual doc i've ever seen. that said the backlog at his office is rough & while he is technically accepting new patients i'm always hesitant to suggest someone else enter in the craziness. i love him dearly & he has been my lifesaver many a time but this past year my body had the bad timing of breaking down big-time when he was fighting his own health battles so that i had to seek out help elsewhere. i'm seeing him again late fall though b/c he's the best i've seen in terms of the "whole picture" autonomic-wise.

many docs combined helped me (or didn't) along the way to varying degrees (most helpful autonomic was dr. khurana, plus GI, uro & endo docs) , but the folks at vanderbilt - while i was there for research - were my lifesaver this year. i wouldn't be able to be giving grad school a shot this fall at all without my trip there & the meds it helped me get on. i really liked my doc there & am going to see him for follow-up in a few weeks but since it's research they can't simply do anything/everything under the protocols & i know not everyone has had the experience i have. the research stay (2 weeks) is without cost but i did have to use my insurance for the first day so that might be an issue for you. i don't know if they accept international patients b/c of the possibility of not fitting the protocol upon arrival. the testing is comprehensive (all but sweat tests) but they weren't as comfortable as dr. g with dealing with GI & other problems despite acknowledging the connection. they do see people outpatient aside from research but the wait tends to be longer.

i'm also seeing dr. chelimsky in cleveland february as that will be my new locale & i've heard good things about him but when i called the end of april that was the first appointment.

perhaps the best thing, like others have mentioned, would be to call for one or more appointments to find out about cost, scheduling, etc. and see where that leaves you.

i've found follow-up is always tough with the good docs but that doesn't mean a visit isn't worth looking into.

good luck, and if you're going to visit make sure & give plenty of notice so we can have a party (with lots of lounge chairs!)


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I have to agree that Dr. Grubb is the best. I have a suggestion for you...call his office and ask if he would be willing to refer you to someone closer to your home. I have a toll-free number (I'm not sure if it works outside of the US) 1-800-321-8383 and ask for extension 3925. Otherwise, you can call 1-419-383-3925 (but it's not toll-free). Their hours ar 8:45 am until 4:45 pm EST (they are on the same time as New York). If you decide to come to the US to see him, I can give you a list of websites that I use for discounted travel. Just make a post that you're coming and I'll reply with information.

Good Luck, Hang in There and NEVER LOSE HOPE!


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Its kind of strange but I actually travel to the UK to see Prof Mathias! I know you have seen him and have read your recent posts re your autonomic tests. It`s apparent from your posts that his NHS patients dont get the same prompt and personal attention that his private patients receive. Sad fact but true. Before you spend thousands of $ on travelling to the US maybe consider going private ..... after all you have had all the expensive stuff done now ! Prof and his staff really are very good. However if Gr Grubbs waiting lists were shorter I would be tempted..everyone seems so happy with him....



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One possibility for the short term - not as good as the real thing, but my doctor in Edinburgh wrote to Dr. Grubb in the States to get advice on my case. Although this isn't nearly as good as seeing him in person, he did phone my cardiologist back immediately with advice, and it didn't cost anything!


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