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Posted

I mentioned before that I am not happy with my current primary care physician. I have not been happy with him for many years now. Before I was diagnosis, I was too bothered by having to explain everything yet again. It would be a nuisance to have to go through the entire history, yet again. It was nice to have someone that I could go to that knew me.

Shortly after I was diagnosis at KU Med, that cardiologist took a sabatical and then went into research. There was talk of sending me to the Mayo clinic, but nothing came of it. There was too much in limbo and I of course just didn't have the energy. I did happen upon my grandfather's cardiologist that knew of POTS. This was nice. I'd go to him and he'd say "yep POTS, sorry no cure". Though when I'd call his nurse with symptoms or situations, he'd always adjust my meds or give advise.

Now, I absolutely LOVE one of my PCP's nurses. If I go to her with normal problems, she's awesome! She can explain what's going on. Then I look for the connection to POTS. She's actually the one that got me back to KU Med.

With all that's going on, I see that's it's getting more and more important for me to get a good PCP that I like. I have started to call doctors in town looking for someone that is familiar with POTS. They don't have to know everything, but I want them to be aware.

Here's my question. During my search, I've been told the PCPs can be family practice docs or they can be internal medicine docs. Do you guys have any opinion on which is better or more likely to be my best shot.

I did talk to someone that has some potential. There was an internal med's nurse that sounded great. When I told him that I have a diagnosis that is uncommon and most doctors are unaware of, his comment was "if Dr X doesn't know about a diagnosis, then he would do the research to become knowledgeable." He even mentioned that is what doctors do. I said "You would think so." I hope I didn't offend him. I do agree with him.

Anyways, even before I told him the dx, the nurse was confident that the Dr would have knowledge. He said the the Dr does a lot of research and is very knowledgeable. I asked if he'd check on whether Dr X had knowledge of POTS and he's suppose to call me back.

I found that whole encounter very promising. The way he talked, this was a dr that I would really like.

Back to my question. Any thoughts on what type of doctor I should start looking for. Family practice, internal medicine, ... others?

Posted

Kendra,

In my opinion, I think the most important thing is someone who is willing to listen and to work with you. I agree: That doctor sounds promising. I think the actual specialty is less important. Like I've said before, my PSYCHIATRIST has been my most useful doctor. In fact, she was the least likely of all my doctors to think it was all in my head!

I'd say if you like the doctor, and they're willing to learn about your condition and try to help you, it doesn't matter if they're a podiatrist! (OK, that might be going a bit far, but you get my point.)

Amy

Posted

Hmmm... with blood pooling in the feet, a Podiatrist might actually be interested! :)

Seriously, though, I completely agree with Amy. The key is finding a PCP who is willing to listen and learn, and it sounds like you may have found one. My PCP was recommended to me by the receptionist of her office group. My Rheumatologist's resident recommended the office group as a place to find a good PCP. I called that group of doctors, and the receptionist said, "I send my Dad to" this doctor. Could there be a better referral???

My PCP has stuck by me through multiple diagnoses and other doctors telling her my symptoms were psychological. To which she would respond, have you seen her lips turn blue? She also was honest enough to tell me which doctors believed this was all in my head, and that helped me remove the disbelievers from my medical "team" to find doctors willing to help.

At my last appointment to see her, a different doctor came in to see me. I was so afraid that she was starting to tire of me and was handing me off. But after explaining my entire history to this new doctor (and you know how annoying that is) and answering all the questions all over again (over at least 30 minutes), the new doctor left and returned with my PCP. My PCP said this doctor is a resident, and "they just don't teach this in medical school." She wanted to teach this resident about POTS through the experience of examining me! Needless to say, I was so very impressed by and grateful to her.

If the nurse you spoke to recommended this doctor and said he/she is willing to learn, you may have just hit the jackpot. I'd make an appointment and check him/her out; you may be very pleasantly surprised.

We bash a lot of bad doctors in these forums, but there are doctors who are still in medicine to help people and who represent the best of humanity. Finding one of those doctors can make all the difference in the world in both your healthcare and your state of mind.

Posted

Anyone willing to listen and work with you can't be bad...In my experience, internal medicine doctors work with typically older patients, and family practice work with everyone.

Some people prefer being able to have the whole family go to one person and some prefer their own. After thirty years of nursing, I have found, personally, that there are great doctors in every field and the pits in every field. So it can be six of one and half dozen of another....The most important thing is, you feel comfortable with the person, know you can depend on them, and they will keep an open mind with you! Good luck in your search! morgan

Posted

I agree. The most important is to find a doctor willing to help, to listen and to treat you.

Above all, the doctor has to be first a person (I mean, who cares about people) and then a doctor.

It seems that you found that person.

Love,

Tessa

Posted

Thank you guys for your input. It really does help. I have a therapist that is the absolute best.

A couple of years ago, I was going through a medical review and the district had me seeing pyschs and docs, I went to the 'help desk for dealing with job related problems' therapist that you get to see 5 or 6 times for free. That guy refered me to my current therapist and she's been wonderful. I continue to see her even when I'm doing absolutely great. I want to "CYA" - cover my ---, just in case I ever get into that situation again. "See I do follow advise."

She definetely was helpful the past few weeks. I just happened to make an appointment the day I realized I couldn't continue my job the way it was currently scheduled. She helped me get in control when it seemed like everything was going to fall to pieces in 1 day. (I'm very blessed.) She has never thought that my symptoms have been psychological in nature. Yes I am stressed and anxious, but it's not causing my condition. It may make it worse, and effect it, but it does not cause it.

She has been encouraging me to call around to find a new doc. She's definetly on my side.

The Lord certainly has been on my side this time around. I will continue my search through that big yellow book. I'm bound to have the 'perfect' doctor fall into my lap. :)

Posted

Kendra,

As others have been saying, realize that you are making a relationship with the whole office. If you don't feel right with the person answering the phone, that's important.

If you feel rushed, or aren't certain that you doctor is actively listening to you, that's important as well.

Finally, and this is the least important, I happen to be an MD. As a physician, all other things being equal I would select a doctor board certified in Internal Medicine. Their training better prepares them for unusual patients like us. It just does. Of course there are exceptions, but again, all other things being equal . . .

Congrats on firing the doctor who wasn't caring for you the way you needed. That takes guts. If they take it personally, tough.

Take Care,

-Mark

Posted

I agree with Mark. Internal medicine physicians have more experience in dealing with medical issues of patients with unusual chronic illnesses. Furthermore, I would add that finding a physician who is not nearing retirement (nothing personal against old-timers here :) ) is also a good idea. It's been my experience that younger physicians have a higher probability of being educated/aware of POTS, NCS, etc. as legitimate diagnoses and a greater chance of researching these conditions through internet, etc. Older doctors tend to be "more set in their ways", more paternalistic, and more likely inclined to believe in the old school of thinking that if you're a symptomatic young woman (or man) with normal routine workup, then you must suffer from anxiety or stress. Best of luck in finding the right PCP!

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