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Dr. In Nyc?


~Naomi~
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Guest tearose

No, not one!

I live in the area too and wished for a good ANS doctor. I wound up in Minnesota.

From my experience and from those here who I read about, don't expect a full complete approach or diagnosis with the locals.

The doctors at Mt. Sinai will say it is "all in your head" and the doctors at Columbia Presb. will say it is "all in your heart". As we know, it can be a combination of both or some still unknown cause.

The issue is really that without the whole body approach to diagnosis, the treatment you are given may not help and may cause you more problems.

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Dr. Brian Boatman in NYC diagnosed me. I wasn't there for very long so I'm not sure how he'd be with long-term care but he dx'd me immediately after going to countless doctors. He gave me a full check up with a tilt-table test, 24 holter monitor, cardio ultrasound, and of course blood blood blood. He started me on Florinef and told me to salt and water load. The thing I liked about him best (aside from finally getting a DX) was that he was rigorous about not letting me use the term 'panic attack' or 'anxiety'. He told me 'this is NOT all in your head. Your symptoms are very real and you need to understand you have these panic feelings because you are symptomatic.'

Again I didn't see him long b/c I ended up having to move back in with my parents in the Pacific Northwest - but I thought he was really amazing.

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I live in Pennsylvania, but the Drs. we've been able to work with are in Cleveland, Ohio. It's quite a drive (ride, in my case), and I end up having to take a day off for travel in each direction.

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I live in OH now, but when I lived in NY I saw a doctor at Columbia Pres who was a dysautonomia specialist and he was wonderful. I think I got his info from the physicians list here but I can't really remember.

His name is Dr. Marc Pecker, 212-746-2210. He will require that you send over records because I don't think he takes patients unless they have already been diagnosed but I would highly reccomend him! And just a warning his receptionist is VERY chatty.

Also I know that the new doctor Dr. Tullo, his info is in the last newsletter is somewhere in NJ and is part of a specialized Fainting group.

Let me know if you need anymore info on Dr. Pecker (yes I swear that is his name)

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Thanks for the responses. I cannot believe there aren't more Dr's in the city.

Stace and Waterbaby-- Are Dr's Boatman and Dr. Pecker Dr's who will go beyond just saying "yep it's POTS -load up on salt, water and take Florinef"? It's hard for me to get into the city because of my condition and because I have two small children, so it's only worth going to see someone with a very good understanding of this condition. I would really like to find someone who will go beyond the tilt test and look deeper. I just don't want to be dissapointed once again.

Thanks,

Naomi

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Valhalla is mentioned in research a bit... do they happen to have practicing docs? Looking at the NDRF listing and such, I'm wondering if they're pediatric specialists. Not sure. Anybody know or dealt with them?

New York Medical College

Valhalla, New York

I do like the name... perhaps that's where the bravest dysautonomiacs go when we die (for autopsy at least :)?!?

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Naomi, I have seen a lot of doctors and would say Dr.Pecker is one of the few that I would recommend. Is not a miracle worker but he did have suggestions for me that other doctors had not thought of and he was always very thorough when I saw him.. he would even have me walk the hall by his office back and forth (as much as I could) and take my pressure and heart rate each time I made it back to him. He hospitalized me at one point because my medication combo was no longer working and he didn't want to just give me new meds to try without being monitored since we had no idea how my body would react.. so I will in the hospital about a week and was able to try a few medications at different doses to see how my body reacted. I now see Dr.Grubb and another cardiologist who is closer to where I live for my "maintenance" but if I was still in NY I would have continued to see him.

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Yes he is a wonderful doctor, and because of all he has been through with his own health he is very understanding and sympathetic, at the end of my first appointment with him which by the way was 4 hours, he gave me a hug! I have never in my life had any doctor spend even close to that amount of time with me... My last few appointments with him have been canceled so I have just been going to my local electrophysiologist, as a matter of fact I had an appointment today and my doctor actually said to me " I've got nothing" after we talked about how I have been feeling and what we have tried and said "when do you see Dr. Grubb next"... not what I was hoping to hear but it seems like at this point he does not know what else to do with me or what is left to try. He is going to put a call into Dr. Grubb and see if he will speak to him and has any suggestions to keep me functioning until I see him next. If you can't get into the city to see Dr. Pecker its worth a try to look into the NJ center for fainting, I don't remember where it is I think it was North Jersey somewhere but the info is in the last newsletter.

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Valhalla is mentioned in research a bit... do they happen to have practicing docs? Looking at the NDRF listing and such, I'm wondering if they're pediatric specialists. Not sure. Anybody know or dealt with them?

New York Medical College

Valhalla, New York

I do like the name... perhaps that's where the bravest dysautonomiacs go when we die (for autopsy at least :P?!?

Ha, ha! That's where my brother-in-law got his med degree. I think they might specialize in familial dysautonomia, which is an entirely different animal, but they might know POTS, too.

As for brother-in-law, he's a pediatrician, so not really useful to any of us. :P

Amy

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Re: Valhalla...I've never been there, but I corresponded in length with a nurse for Dr. Stewart. There's typically a few month waiting list. You need to fill out some forms. I would have gone but I had to go back to school at the time. The nurse was really helpful and scanned medical records she got from another doctor and e-mailed them to me so I would have them.

As far as an NYC doctor, Ludmilla Bronfin is very thorough. She referred me to Mayo to confirm my diagnosis, but she was the most knowledgeable as far as dysautonomia I had seen at that point. Now, she answers my treatment questions over the phone. I think she's associated with NYU's Langone Center.

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