dOES ANYONE LIVE IN New York?

[lindaf]

I AM WONDERING IF ANY OF YOU LIVE IN THE Buffalo, New York area and if so, who your doctors are? I read all of your postings everynight and my heart goes out to each and every one of you. I don't remember who posted today that was a new member, but was upset with the way her husband was handling her illness. Men have a hard time coping with illness. Usually when they are sarcastic, it is because they are just plain scared. They are not use to being the nurturing ones, and are use to you running the house, children, cooking, shopping, cleaning, etc. It is a known fact that a man can only do one thing at a time and they don't know how to juggle all of the above. Hang in there, because as they mature, they start to show much more compassion. Love to all, Linda

[Michelle Sawicki]

Bumping this up....anyone?

[funnyfrog]

Hi Linda F. - I personally have not seen this Dr. but I emailed Dr.Robertson last year at Vanderbilt in Tn. about a matter and he suggested that I contact a Dr. Julian Stewart in Valhalla NY, this Dr. Stewart is a well known researcher & POTS Dr. according to Dr. Robertson - I know Valhalla is somewhere upstate NY, although not as far up as Buffalo but maybe you could travel a little to see him by car with someone - I am from New Jersey, my neurologist is at Columbia Presbyterian Hospital in New york City so I don't think that would help you too much but if you want more info, please let me know - Have a nice Sunday! Beth

[yogini]

I live in New York. My main POTS doctor is Dr. Horacio Kaufmann at Mount Sinai. I am actually on vacation in CA right now and was quickly checking messages, but I would be happy to talk to you about doctors in the NY area when I get back later in the week.

[Radha]

i have tried to called dr.kauffman but he never returned my calls, i cannot travel at all, i live in N.Y. i know this is a huge favor, but could you maybe ask him to talk to me if i gave you my full name and maybe ask him if he would do a phone consult? i know you dont know me, and i am asking alot, and its ok if you decide not to, i had to ask, thanks

radha

[leah1321]

I have heard very bad things about Dr. Kauffman...from other doctors! I know a few other ex-patients of his who told me awful stories too. If someone is having a good experience, then you are unbelievably lucky. I live in NYC and I actually go to a doctor in Baltimore because I went to Johns Hopkins U for a few years and I just liked him a lot. I have an Electrophysiologist on LI who is considered one of the top few in the country. His bedside manner is lacking, but he tries and he wants to empathisize, he just misses the mark a little. He is great, but I think he would want you to travel. His office responds quickly. Research St. Francis Heart Hospital and look up arrythmias and electrophysiology. I have another neuro at Cornell who I think is brilliant, but the least sympathetic human being on earth. He wants you fixed, so he will work hard for that. He also is not afraid to prescribe stuff or not to if you don't need it. He has read all of the research. However, he is a general neurologist, not a specialist in our field. Dr. Stewart at Valhalla will not see you unless you are under 19. he is a pediatrician and he already told me that he would not see me and I had just turned 19 a few months before and had been sick since the age of 15. He referred me to other doctors, including two of the ones I see already. You might want to look into doctors in Ohio, like Dr. Grubb and others at Cleveland Clinic. There are some good doctors in Boston as well.

Beth- what doctor do you see and what does he/she specialize in?

[funnyfrog]

Hi Leah - I see Dr. Louis Weimer - He is an Assistant Clinical Professor at Columbia University and his office is located at The Neurological Institute At Columbia Presbyterian Medical Center - The main phone # to make an appt is (212)305-1516 - He is ok, knows alot about POTS, but I feel like I have to ask alot of questions to get info out of him, he doesn't just freely give me the info. His personality is ok - The parking situation in that part of NY is terrible, very expensive and you have to park in a parking lot or take public transportation - My first consultation with him 3 years ago was over 3 1/2 hours long so he is very thorough and he does have other patients with POTS so he is aware of what we go through and does not think we are nuts. Hope this info helps you. Beth ***** As for the 2nd part of your question, he specializes in dysautonomia*****

[yogini]

Linda, one other thought I had - since you live in Buffalo, you may want to consider going to the Cleveland Clinic or to see Dr. Grubb if you are near Ohio. Both seem to be highly reccommended by others on this site - maybe they are closer to you than NY.

Radha, I would be happy to try calling for you, but sometimes I have trouble getting through too. If you keep calling you can usually get his assitant in person, which is better than leaving a message. If you send me an email, I can also get you the email addresses of his assistant and two residents that work with him, who are pretty good about responding immediately.

As for the other doctors mentioned, I have tried calling Dr. Weimer at Columbia and I was told he is not taking new patients. Dr. Stewart at Valhalla does see people over 19 because he agreed to see me and run some tests, and I am well over 19. I decided not to have the testing because I would have had to go off all my meds.

Also, I think I would be more comfortable discussing this topic through private email.

-Rita

[Radha]

hi rita, my email is radha21@aol.com so please send me the doctor's and his assistant's email addresses, can i mention your name, will they know you? and if i can mention your name, please give me your full name, thanks so much, do you think there is any chance they would do a phone or online consult?

radha

[briarrose]

This might be a stretch so I almost hate posting it but Dr. David Bell is in Lyndonville, NY and is suppose to be one of the best CFID's docs around. He also worked with Dr. Streeten in the early 90's and knows about POTS and Dysautonomia.

I've never seen him so I don't know if anyone here has had experience with him.

[cnm1]

Dr Bell is amazing. My daughter Rachel saw him initially when she became ill with CFS which was eventually dx as POTS. He believes most CFS pts have a post viral dysautonomia. He also writes amazing follow up letters. He referred us to Dr Grubb for follow up tx. Here is link to his website and newsletter

http://www.davidsbell.com/index.htm

Louise

[lancewhit]

Hi all,

I live near NYC, have been diagnosed with some type of dysautonomia, and have also been searching for a good doctor.

I'm familar with some of the doctors mentioned here. I contacted Dr. Weimer, but was told he is not seeing new patients. I tried contacting Dr. Stewart in Valhalla a couple of times, but never got a reply. I assume he mostly focuses on pediatric patients (I'm in my 40s). And I tried another doctor who was mentioned in one of the messages above, but like other patients, had a very awful experience with him.

I'd appreciate any recommendations on other doctors--neurologists, cardiologists, etc., in the NYC area.

Thank you.

[worththewords]

I'm currently seeing Dr. Stewart for his study. I'm 22 and I didn't get the impression that he primarily focuses on pediatric patients (although I might be mistaken). There is info on his study on this site under 'studies'

Dr. Stewart's knowledge on POTS has been very refreshing as most of the doctors I've seen rarely know what I am talking about or experiencing.

[lancewhit]

I read about the clinical study that Dr. Stewart is conducting on POTS. But it's restricted to people ages 15-29. Dr. Stewart does sound like one of the experts in this field. I wish I could find someone like him in the NY area who treats adults.