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This Is Worse Than Dating!---Total Rant...


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Good Grief! Finding a primary care doc is worse than finding a husband! At least there are match-making services and speed dating! First, I was "inherited" by my current doc when my previous, fabulous doc was picked up by Mayo. Now, both my cardiologist and nephrologist are leaving their practices to "pursue other goals." I can't keep paying co-pays for new patient appointments only to have these people tell me that they won't treat me! I started writing short letters to doctors and clipping them to the shortest scholarly article that Dr. Grubb has written on POTS and delivering them to potential docs offices. Now, I'm getting nice phone calls rejecting me too!

This is AWFUL!!!!!!!!! Aaaaarrrrrrrrgh!

What in the blue blazes do these people go to medical school for? To learn how to treat blisters!!!!!! Where have all the medical brains gone?!

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I just found a physician who is a professor of medicine in neurology, so I'm somewhat excited. The office said she treats dysautonomia so I'll give it a go.

I called quite a lot of neurologists and got rejected as a patient. It's difficult to find someone because this condition isn't taught in medical school.

I would suggest looking for professors of medicine or those involved in academics, it's unlikely you'll find a clinic doctor willing to take you on.

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I'm sorry you are having this issue - it is definitely very frustrating...especially since you had a good doc to start with! A dr/patient match making service would be great!

I totally agree with Jangle about finding someone involved with academics!! I recently travelled to see an EP/Cardiologist and she was excellent (competent, caring, interested and confident - but with no ego to get in the way). She has only ever had a few POTS patients, but hadn't seen blood pooling like mine before. She was keen to see me as a regular patient, but knows the travel would be difficult so she will keep it to every 6 months. She even contacted my internist back home to make sure he is comfortable with treating me with her guidance. She said that if he isn't comfortable, she wants me to come back to her. I was blown away by her level of interest given that she deals with life and death issues everyday. Anyway, I found out a week later that she is a prof at the local med school - so that really explained alot. She is in that "learning/teaching mode", so she didn't mind telling me that she had to go look some stuff up and meet with me again in 1/2 hour. I have a feeling, based on her reaction to it, that my purple feet are going to end up being mentioned in one of her classes. I hope they do, because med school is exactly where POTS needs to get some exposure!

I hope you find the right match!

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I totally get what you mean, Futurehope!! I recently tried to make an appt. with a POTS doctor/researcher. They asked me to mail in all my recent tests and medical records. I did. I got a call that "the doctor is not able to take your case. He is really booked with patients, and he teaches at the medical school......" blah, blah, blah. I was kind of floored. I mean, I really have POTS and the POTS specialists are going to pick and choose their patients? How am I supposed to get care for my POTS when they won't accept you? I have great insurance. I asked the lady that called if she could find out why I wasn't accepted, so at least I could have a clue, and she said she would find out. Yea, I'm still waiting on that 6 weeks later.

I was a glass-overflowing kind of person, and my medical care is leaving me bitter. I hate that part of it.

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Are you looking for a primary care dr to manage your POTS? I was told by a doc friend most docs don't read what we give them, so maybe they are scared off if you are sending them literature before you've even met...and havent even paid a copay. Sad, but true. Can you get a recommendation from someone on the forum? Otherwise, ask friends for a caring PCP or one that is at least open to seeing chronically ill patients.

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@Sue1234,

If you are posting an answer to me, I'm confused? This is my first post on the thread.

@firewatcher, I agree with another poster, attaching a write-up of your condition may be counter productive. Just use the internet or forums to find a doc. And, oh yeah, I haven't found a good PCP yet. Not easy.

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Firewatcher,

sorry you have to go through this.

It's frustrating to have to start from scratch, particularly if you had a good team of doctors.

I wonder too about what they teach in med school - no offense to any dr in particular, but can they at least teach some kindness, compassion, willingness to learn? Why go to med school if you are not capable to help or if you're not willing to continue to educate yourself? It's unfortunate, but it's the reality we have to deal with.

Hope you find someone who you can trust and who can help you...we are anything but low maintenance.

Alex

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I hear your frustration and can TOTALLY relate to it.

Personally I think it's not just medical school where they aren't being taught to think anymore...it's pervasive throughout so many school systems at all levels. People aren't taught HOW to think anymore (as in using logic and reasoning), they're taught WHAT to think....as in....Patient A has diabetes so my cookbook medical book says do X,Y and Z. Patient B has a spinal cord injury so do R, S and T. But when you have a POTS patient, we don't even make it into their cookbook medical texts so they don't know what to do. They haven't been taught WHAT to think about us and they don't know HOW to use logic and reason and think things out for themselves so they find it easier to discard us basically.

Unfortunately yours is a rant that all too many of us can relate to. Hmmm wonder if they would set up "speed doctor appts" like speed dating. You could probably tell within a few minutes if they'd be a fit or not. (I used to want a drive thru pediatrician just so I could hold my kid out the window and have them look in their ears when they were sick.) On the other hand, from my experience, it would be hard with some doctors to be able to differentiate their regular appts with a "speed date" appt. :blink:

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