JaimeS
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This was initially going to be a post to answer a question posted by @cman89 , but then I realized it was quite off-topic (the initial topic was to do with epinephrine!) so I moved it to a new thread and replied here.
I would love to hear other people's take on the same topic. I think this is something that a lot of newbies could use some help with, so please share your knowledge and experience here!
Original posted question:
@cman89 then said,
And my answer:
First, I went onto a rate-my-doc site and looked for people who listed themselves as internists rather than GPs. I probably got that idea by reading something on here - I was a lurker long before I was a poster. After reading comments on the rate-doc site like "they really listen" and "they take time to explain", I called a few offices. In several, the staff seemed surly and uncooperative. One office never called me back; I suppose their patients are not that important to them. Lack of communication is a pretty good indicator of a lack of general interest.
Finally, I rang offices where the person who took my call was the mother of an old student of mine. A student who'd been a little difficult, but we'd gotten along well. Mother heard I'd had son as a student, said, "...oh, I'm sorry." I was struck with offense on the child's behalf. This kid was quirky but good-hearted, of the bright ADHD variety. But she'd obviously been trained by circumstance to believe that everyone but her found him to be a trial. I rushed to assure her that he hadn't been any real trouble, and that he was a bright kid with a sweet nature and that's all that really matters, and I'm sure he's continued to get good grades and do well. There was a pause, followed by a heartfelt, "...and what can I do for you?"
Sometimes karma is real.
I told her I was having real issues, and I needed someone bright, research-oriented and collaborative, who was willing to talk things out. She was able to direct me to the best person in her already highly-rated practice, and she seemed very sure: "oh, you want Doctor X!" Me: "...you think so?" Her: "...oh absolutely, that's exactly who you're talking about." And she was right. I won the doctor lottery, especially for my podunk little area.
Even if you can't have this kind of luck, you can still go to a doctor rating site and look for local internists who come highly rated and call their offices (or drive by/stop by) to see if they have a good feel - staff who like working there, good working environment, an energy that seems to be of the push-forward, do-better variety. My previous GP is highly rated on those sites despite being condescending, narrow, and quite certain of his genius-level expertise despite all evidence to the contrary, lol, so you also want to talk to someone and ask for investigative, open-minded qualities in particular, and you definitely want to visit or call so you can get a feel for the place. Your instincts will tell you a lot.
Even if you are being seen by one of the ME experts, it's VERY helpful to have someone local to touch base with.
-J
I would love to hear other people's take on the same topic. I think this is something that a lot of newbies could use some help with, so please share your knowledge and experience here!
Original posted question:
Earlier, you said that what we really need is a doctor who can spend hours upon hours on our case, and I agree. It's what is needed, but as you said, it's not what we're going to get unless we're far wealthier than the average citizen. We can spend hours and hours on our own cases and, if we're lucky, find a doc willing to listen to our findings for a half an hour or even an hour, and help us make decisions.
I was lucky enough to find a GP like this. She said, "I will work very hard for you, but I do not think I will catch this fish." Then she suggested that I keep researching, and I might be able to 'catch' it. It seems like someone willing to listen to you and work with you is the holy grail in this mess.
-J
@cman89 then said,
How did you find such a holy grail doc?
And my answer:
First, I went onto a rate-my-doc site and looked for people who listed themselves as internists rather than GPs. I probably got that idea by reading something on here - I was a lurker long before I was a poster. After reading comments on the rate-doc site like "they really listen" and "they take time to explain", I called a few offices. In several, the staff seemed surly and uncooperative. One office never called me back; I suppose their patients are not that important to them. Lack of communication is a pretty good indicator of a lack of general interest.
Finally, I rang offices where the person who took my call was the mother of an old student of mine. A student who'd been a little difficult, but we'd gotten along well. Mother heard I'd had son as a student, said, "...oh, I'm sorry." I was struck with offense on the child's behalf. This kid was quirky but good-hearted, of the bright ADHD variety. But she'd obviously been trained by circumstance to believe that everyone but her found him to be a trial. I rushed to assure her that he hadn't been any real trouble, and that he was a bright kid with a sweet nature and that's all that really matters, and I'm sure he's continued to get good grades and do well. There was a pause, followed by a heartfelt, "...and what can I do for you?"
Sometimes karma is real.
I told her I was having real issues, and I needed someone bright, research-oriented and collaborative, who was willing to talk things out. She was able to direct me to the best person in her already highly-rated practice, and she seemed very sure: "oh, you want Doctor X!" Me: "...you think so?" Her: "...oh absolutely, that's exactly who you're talking about." And she was right. I won the doctor lottery, especially for my podunk little area.
Even if you can't have this kind of luck, you can still go to a doctor rating site and look for local internists who come highly rated and call their offices (or drive by/stop by) to see if they have a good feel - staff who like working there, good working environment, an energy that seems to be of the push-forward, do-better variety. My previous GP is highly rated on those sites despite being condescending, narrow, and quite certain of his genius-level expertise despite all evidence to the contrary, lol, so you also want to talk to someone and ask for investigative, open-minded qualities in particular, and you definitely want to visit or call so you can get a feel for the place. Your instincts will tell you a lot.
Even if you are being seen by one of the ME experts, it's VERY helpful to have someone local to touch base with.
-J