Dysautonomia Specialist--Northeast US?

[Jyoti]

I am looking for someone to consult about worsening orthostatic intolerance, preferably in the mid-Atlantic, northeast area of the US. Was wondering if anyone has experience with Dr. DePace (who is very convenient)? I saw a thread started by @Pink but I think she left PR a couple of years ago. Could not find anything definitively helpful there.

And then there is Johns Hopkins. Does anyone have advice or experience there?

I am feeling a bit at sea--after spending much money on both an ME specialist and a CCI specialist neither of whom really offered much assistance, I am wondering about someone more 'rumpled' as Dr. DePace seems to be.

In any case, I would be grateful for any stories/experiences that anyone can share. I do have DI's list, by the way.

Thanks!

 

[lenora]

Jyoti....Good morning! I can only tell you that the place I've consistently heard negative reports concerning its neurological department is The Mayo Clinic, so I wouldn't waste your time or money there. I'll let others come up with personal recommendations, b/c I'm out of touch with the names of individual doctors (mainly b/c so many have retired). However, I am wishing you success. Yours, Lenora.

 

[Diwi9]

Dr. Blair Grubb at University of Toledo comes to mind, but that may be out of your geographical search.

http://utmc.utoledo.edu/clinics/hvc/syncope-center/experts.html

 

[Sushi]

Dr. Blair Grubb at University of Toledo comes to mind, but that may be out of your geographical search.

Like most, he has a really long waiting list, but patients think he is worth the wait. Then there is:

Dr. Svetlana Blitshteyn is a neurologist specializing in autonomic disorders. She is the Director and Founder of Dysautonomia Clinic, where she provides consultations for patients with POTS, neurocardiogenic syncope, small fiber neuropathy, chronic fatigue syndrome, fibromyalgia, Ehlers-Danlos syndrome, mast cell activation syndrome, chronic migraine and other neurologic conditions.

https://www.dysautonomiaclinic.com/dr-blitshteyn/ She is in Buffalo but does phone consults.

 

[sometexan84]

Dysautonomia specialists, worldwide list...

http://www.dysautonomiainternational.org/page.php?ID=14

 

[Jyoti]

Thanks all. I will check out Dr. Grubb--I have read about both him and Dr. Blitshteyn and will look further in those directions. I guess the other thing that (duh) did not really penetrate my foggy brain is that almost EVERYONE is doing some sort of remote doctoring, so that might open up some more distant possibilities. And I will definitely skirt the Mayo Clinic!

 

[bensmith]

mayo is bad, weird.

 

[Nico]

Thanks all. I will check out Dr. Grubb--I have read about both him and Dr. Blitshteyn and will look further in those directions. I guess the other thing that (duh) did not really penetrate my foggy brain is that almost EVERYONE is doing some sort of remote doctoring, so that might open up some more distant possibilities. And I will definitely skirt the Mayo Clinic!

Jyoti, have you consulted with Dr. Blitsheyn? I am somewhat ready to make an appointment with her. Someone in 1 of my mecfs groups said she really helped them. But, I don't know any other pwme who have consulted w/her. OI has worsened since the C19 vaxxes, unfortunately. Just wondering if you have, and how it went?

 

[Nord Wolf]

Is Dartmouth-Hitchcock New Hampshire too far from you? Dr. Robbins is their autonomic neurology specialist.

 

[Jyoti]

Jyoti, have you consulted with Dr. Blitsheyn?

What a long and winding road it all is, as @Nord Wolf is excruciatingly aware this month. I did not see Dr. Blitsheyn. I found a neurologist (Ramesh Khurana) within (long) driving distance from me who specializes in dysautonomia and from whom I have gotten good care and some small improvements. If you want more info, PM me. Then three months ago, I got a call from Dr. Grubb's office offering me an in-person visit (I assume that I put myself on his waitlist so long ago I forgot about it) which was supposed to have happened last week. I took it, provisionally, but had so much trouble figuring out transportation safely that I had to postpone.

But you have made me think about Dr. Blitsheyn again. Let us know if you do see her and how it goes!

 

[Nico]

What a long and winding road it all is, as @Nord Wolf is excruciatingly aware this month. I did not see Dr. Blitsheyn. I found a neurologist (Ramesh Khurana) within (long) driving distance from me who specializes in dysautonomia and from whom I have gotten good care and some small improvements. If you want more info, PM me. Then three months ago, I got a call from Dr. Grubb's office offering me an in-person visit (I assume that I put myself on his waitlist so long ago I forgot about it) which was supposed to have happened last week. I took it, provisionally, but had so much trouble figuring out transportation safely that I had to postpone.

But you have made me think about Dr. Blitsheyn again. Let us know if you do see her and how it goes!

I'm probably going to try Dr. Blitsheyn. Waiting for a reply from an email to make an appt.

 

[Jyoti]

Good luck! Let us know how it goes.