Trying To Find A New Dr

[yogini]

On Friday I went to my regular cardio who I have been seeing for POTS, and he told me he thinks I should try accupuncture!?!. I didn't know whether to laugh or cry at that one. This is after I have been sick for 6 weeks and printed out the DINET page with all of the different treatment options on my last visit...I have only ever taken atenolol and florinef, so I am sure there is something better out there than accupuncture.

I have tried over the years to find a better doctor, but each dr I go to doesn't seem to know enough about my condition or tells me that I am fine. Last year I got a glowing dr recommendation from someone who has NCS, but it turns out he specialized in pacemakers and knew nothing about POTS - he kept asking my about my blood pressure and why I was taking a beta blocker. It was a really disappointing and demoralizing experience.

But, after being sick for the last 6 weeks, I really need guidance from a dr. I just made a bunch of phone calls. I have two appoinments so far, though neither of them is what I want. I have one tomorrow with a nurse practicioner for a cardiologist who is listed on the NDRF site, and then I have one in mid-March with a leading electrophysiologist in the city...which could be exciting, but not for another couple of months...I really don't want to wait that long. A couple of other doctors that I called need to review my records before I can have the privilege of seeing them. The worst part is that these are just random names I found on websites and I have no idea whether any of these people can provide me with useful advice. After all of the doctors I've seen and reading what many of you have gone through, I can't help but feel skeptical. I really don't think I have the strength to go through this again, especially when I am feeling so bad physcially.

[JenniferInOhio]

I feel for you. I don't have a doctor either, well, I do but he is an EP and during my last visit he was surprised I still had POTS...he thinks I should have recovered by now I don't have anyone either

Anyway, I hope you find someone!!

[Guest tearose]

This is a sad reoccurring theme for us folks in New York! You would think we would have access to an excellent ANS testing center!!! I do know Greenwich Hospital in CT has the equipment, they just don't have the people to run it!

I am so disgusted myself. I have only my good PCP to get me through so I make the big long trip to Mayo. I will be leaving on Sat. and I will be sure to ask for us what follow up close to home is suggested.

take care, tearose

[yogini]

Thanks, guys. Tea, I am hoping that one of these electrophysiologists will be decent. I looked on the websites of what I think are the two top hospitals in NYC and found the names of the EPs that specialize in TTTs and syncope, so hopefully they will know something about POTS. (One of the dr's was also on NY Magazine's list of best EPs, which I will start making my way down next if things don't work out). I don't know why I didn't think of this idea earlier -- I guess there is nothing to lose, other than a few tears of frustration if the drs are cruel or unhelpful. I'll be thrilled to share the wealth if I find anything.

Good luck with your appointment at Mayo. I also went there a couple of years ago. My parents are encouraging me to go back, which I might think about down the road. I still need to find someone to manage my care locally. Even if I miraculously feel better tomorrow, I have realized I need to keep looking until I find a good dr for the long haul.

-Rita

[mom4cem]

Rita,

I hear you on the dilemma of finding a knowledgable Dr. here in NY. I have yet to find anyone either. I rely on my cardio for basic things but he has know knowledge of dysautonomia either.

I hope you find someone soon.

[Guest tearose]

Good luck with the EP Rita. The (highly regarded) one I saw wanted to go the ablation route...

I knew I had the wrong doctor!!!

I have a super PCP/internist in Westchester County who maintains me. I am doing exactly what your family recommended for you to do...return to Mayo for followup. I have been looking for five years for a POTS literate neurologist (who treats adults) in the NY area...

I can't believe I have to do this trip! The planning, physical toll and expense makes it a multifaceted challenge. Is it really that rare that we can't have good treating doctors close to where we live?

I'm hoping either Mayo will make a recommendation or someone will post here about a super ANS dr we don't know about.

ever hopeful, tearose

[yogini]

When I went to Mayo, they recommended Dr. Kaufmann at Mt. Sinai, who I'd already seen.

My appointment this morning went much better than expected! It was with a nurse practicioner, who seemed to have at least heard about POTS and knew to take my BP standing up. My BP dropped a bit, which it doesn't always do -- explains why I've felt so dizzy. Then the dr came in, and he knew quite a bit about POTS too. He explained what was going on with my body and the different treatment options. He mentioned midodrine and SSRIs, which were the exact two meds I was thinking about for myself. I'll be trying out the lowest dose of midodrine this afternoon. I am so excited and relieved - even if the med doesn't work, it seems I finally have someone that can actually help...

[MightyMouse]

I used to go up to Columbia Presbyterian in NYC from where I live near Philly for care at the syncope center, but the doctor I saw there retired. I then ran into the same issues you've all reported--no one who has the whole package of both clinical skill, knowledge of my specific disorders and/or a willingness to learn, and the personality to get along well with me. I did find a gp for a while, but her front office was so horrible (I called her secretary the "Bull Dog at the desk") and I have YET to get my records from them after a YEAR now.

Wish I could give you better news.