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Corrie J

Seeking A Doctor In New York City

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I have been seeking assistance from various specialists and physicians over the past 3 years for my condition. I have yet to be diagnosed with Dysautonomia, it just has been suggested. I finally have a primary care who is very compassionate and some what knowledgeable about Dysautonomia, however, he thinks supplements and positive thinking will treat my symptoms. I agree about the positive thinking but supplements are not working. I have had a tremendous amount of lab and diagnostic work up, however, most test are normal.



I reside in New York. I have contacted the NYU Dysautonomia Center for assistance. Unfortunately, they do not accept most insurances and out of pocket fees are very expensive(no payment plans). I have also seen 2 neurologists listed on the DINET physician list, however neither one was able to assist me. One physician only treated POTS patients,( I'm told I do not have POTS), the other just wanted to treat symptoms(medication did not help.. exacerbated symptoms ) and he did not think further testing needed to be done.



Does anyone live in or around the NYC area who can suggest a doctor please?



Thank you


Corrie J


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Hi, Corrie,

I hope the following doctor list I am about to provide you with will hopefully find you a few good physicians (Fingers crossed! ;))

Thanks! Sarah

1. Dr. Horacia Kaufmann - New York University (NYU)

2. Dr. Tim Lynch - Colmbia Unversityi

3. Dr. Stan Fahm - Columbia University

4. Dr. Blair Ford - Columbia University

5. Dr. Mark Gordon - Long Island Jewish Med Center

6. Dr. Paul Greene- Columbia University

7. Dr. Emilio Oribe - New York Hospital Medical Ctr of Queens

8. Dr. Richard Mueller - Medical Associates of New York

9. Dr. Frank Mazzola - N. Suffolk, Cardiology Associates, Arrhythmia's & Diagnostic Treatment Ctr

10. Dr. Julian M. Stewart - New York Medical College *PEDS*

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Do you have a positive tilt table test? if you have not had one, many of the drs in NYC will do for you.

It sounds like your diagnosis is not clear, so I would focus first on getting a diagnosis before finding the right doctor. It takes a lot of time to find the right doctor, and you might not want to spend the time unless you are fairly certain you have dysautonomia. The detailed dysautonomia testing also may not make sense if you don't have a diagnosis. It is not always helpful (I had it and found that trying different treatments was more helpful than the testing).

Positive thinking never hurts but it is a very small component of what it takes to help our condition. I respectfully think that if your doctor is emphasizing positive thinking he doesn't understand dysautonomia at all (and most doctors don't). I doubt he would say to a diabetes patient you need positive thinking and insulin, just insulin. Some people have had luck with supplements, but I think people generally try medical treatments first.

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Hi Yogini,

Yes. I had a tilt table test done. I was told it was positive for orthostatic hypotension. But the neurologist disagreed with the results. My blood pressure did not drop until after being given the medicine that makes your heart race. So the neurologist does not think the test was correct.

I have a lot of symptoms similar to an autonomic dysfunction. I have been on beta blockers and mestinon but so far they exacerbate my symptoms.

My challenge at this point is finding a doctor who can make a clear diagnosis from all my symptoms. Like you stated, there are many doctors who are not clear about this condition.

Thank you!

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Dr. Marc Gordon on the list above is the first cardiologist that I saw, he did my tilt table test etc and diagnosed me. After seeing him, I went to a specialist, in NYC, Dr. Mark Pecker (yes funny name!). He was very helpful and I saw him until I moved out of state. I would highly recommend him. He is at NY Presbyterian.

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Get a BP monitor at home and start taking your BP a few times a day, sitting and standing. Keep a log. You will get a good sense of whether you have OH, and it will be helpful to show your doctor. Betas lower your BP so can sometimes be hard for OH.

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