Dysautonomia Specialist--Northeast US?

Jyoti

Jyoti

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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!
 
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L

lenora

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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.
 
Sushi

Sushi

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Diwi9 said:
Dr. Blair Grubb at University of Toledo comes to mind, but that may be out of your geographical search.
Click to expand...
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.
Click to expand...
https://www.dysautonomiaclinic.com/dr-blitshteyn/ She is in Buffalo but does phone consults.
 
Jyoti

Jyoti

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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!
 
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