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Pots Doctor In Nyc


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Guest tearose

I can tell you where not to go...

Don't go to Mr. Sinai!!!

NYU only specializes in familial dysautonomia.

Columbia Presb. has an "okay in an emergency" reputation. They did my first ttt and dx POTS but did not give me any treatment plan. I had to figure things out and I pushed too hard and wound up tearing up my pelvis from exercise.

After years of being sent all over I wound up at Mayo, MN and still believe they have the best understanding and tools to help.

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Thank you tearose! Wow. You would think NYC would have someone, I saw dr george thomas from cornell for my TTT and dr ilya kaplan is my current dr but he says I am all better because my bp is better. The thing is I don't feel all better.

I have heard the wait at mayo is so long. So hoping there was someone around here who could make me a treatment plan but I guess I will have to branch out! I have heard a dr. Polsinki(sp?) From DC is amazing but he is not taking new patients.

Thanks again!

I have cancled my nyu appointment because I don't think they will be any help

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Oh no, no NYU? I was hoping there might be someone there to help. I understand your dilemma. I have scoured the tri-state area looking for a good Dr. and keep coming up empty. My latest conclusion is if I am going to get any real expertise/help I'll have to travel. It's just impossible for me right now with a 2 and 7 year old. I can't even escape to the bathroom most days. It'll have to wait. I have to say though if you think the Florinef helps you feel better, just tell the Dr. you want it?? Or go to a primary care Dr. and ask for it? It's not like you're asking for heroin.

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Hi,

I'm not sure how good he is yet, I've only seen him 2 times, but Dr. Weimer at Columbia works with POTS and other autonomic disorders. Another dr has to refer you to him in order to be able to see him, like you cant just make an appt. yourself. Initially I just had tilt testing/autonomic function tests done by him. Then later on, after the other dr I was working with basically gave up on me and called me "treatment resistant"... I pushed to have a consult with Dr. Weimer and to see if he'd work with my local neurologist in order to treat me, since it's not easy for me to get into the city.

I hadnt seen an "autonomic specialist" before, so at least talking to him validated a lot of my symptoms.. ha, and at least he knew what POTS was, cause other doctors just look at me blankly. As far as treatment goes, that I'm still unsure about.. my local dr did his fellowship with Dr Weimer, so i thought they'd be good working together, but it seems he can never get a hold of Dr. Weimer, at least not yet. We did come up with a "plan", but ha, it was mostly based on all questions/suggestions i brought to him.. which is good that he listened, but i think he just thought i was ok taking care of myself. Nothing earth shattering though, just to try midodrine, compression stockings.. basic stuff.. I go back to him in July, and that'll be the real test of him. I haven't responded to the midodrine,etc and dont really know if there's many other things to be tried, based on what I've already experimented with.

My goal is to find someone who at least wont give up, even if there is no cure or treatment i'm responding to at this point. i've been getting progressively worse for 16yrs, so i know things dont look too good, but i feel like if we officially give up, than i dont stand a chance. though he wasnt as harsh to say I'm "treatment resistant" like the other dr... he did seem to be trying to tell me in a nicer way, i might stay sick like this... he did say there are some more things we could try first though....

He does a lot of research apparently and only sees a few select patients, so it may be tricky to get a hold of him. But right now, for me, the combo of seeing him every 6mo, and then having my local neuro try to carry out the rest is my best option, since i have trouble with transportation. There's no way i could get to Mayo, ha, even getting to the city is really hard, but since I'm on disability, it's even more important I have an "expert" on my case, that can at least attest to some things.. and i figure, since he's supposedly up on research, if anything new does come out in the field of POTS, keeping some sort of relationship with him, seems my best chance.. even if he doesnt seem so amazing yet.

Ha, dont know if that helps you,but that's been my experience thus far.. since there are not many POTS drs around at all, i'm taking what i can get.. and for a fancy specialist, at least he is fairly nice and civil..he lets me talk/question him..so I dont have a problem there.. I just dont know if he'll have many suggestions beyond the basic stuff as far as treatment goes..

the NYU guy, my other dr knew, and told me he deals with dysautonomia, but never hooked me up with him, he doesnt take insurance anyway, and i had previously been rejected twice by him... he didnt seem too nice from what i gathered, and i do think they mostly do familial dysautonomia, and other more severe conditions there.

Dr. Nicholas Tullo is in NJ, i havent seen him yet, but some other patients on this site have reported liking him.

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Dr. Mark Pecker at Wells Cornell (which I always confused and I am not sure if it is part of Columbia Presbyterian). I found him after my electrophysioligist at LIJ hospital told me that he felt like he had run out of options to try with me and recommended I find a doctor with more experience. He was my specialist until I moved out of state and he was wonderful! I know for a while he was not taking new patients but that if you called and explained your case and that you have already been diagnosed with POTS/Dysautonomia that he would take you on as a patient.

http://www.weillcornell.org/mspecker/

212-746-2210

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Hi Stace,

Did you find Dr. Pecker to offer more or different treatment solutions than usual? or just persevere more? Just curious. And it lists him as "internal medicine"..with "expertise" in autonomic dysfunction and hypertension.. does he act as more of a primary care doctor then? or more focuses on his "specialities"?

Ha, and yea, I was confused for the longest time about what Columbia Presb. was/wasnt. Then a friend of mine who's a nurse there explained to me that "Columbia Presb." is made up of the two hospitals.. Weill Cornell and Columbia.

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Hi Caterpilly,

Unfortunately Dr. Pecker didn't offer any treatment solutions that I hadn't either tried or read about before but he took the time to try everything with me, and kept a very close eye on me and my case. In the beginning he did blood draws once a week and when I would see him would not just do the usual taking my bp and hr while I was upright and supine, we would actually go and walk up and down a few stairs and do other things so he could monitor exactly what my body was doing etc. He was much more hands on than my other doctors were and I felt like he was doing everything he could for me and looking beyond normal treatments and meds when something did not work, and there were some medications that he had tried with other patients that I had never heard of.

I saw him on a very regular basis but as far as him being a primary care doctor, I was surprised to see that he is listed that way because as far as I knew he only treated autonomic dysfunction and hypertension. Since I saw him so often I would discuss other things with him as well but as far as if I had a cold or something I still had a primary care doctor that I saw for those kinds of things. I remember that any time I went to see him I was always the only younger patient and the majority of his patients were elderly so my guess is the base of his patients are hypertension and then he also sees his "special" autonomic dysfunction patients.

Hope that helps and that he is as helpful for others as he was for me!

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