Amazon can sell many “rare” books due to not having to deal with “stocking the shelfs”. You assume the consumer knows what they want.

Drs also have to work within logistics and profit on some level. Even specialists are still generalists in the sense that many of thier cases are still pretty routine. So the avarage doc rightly works in the high volume, routine case enviornment.

To simplify treatment of the “long tail” oddballs perhaps we could shift to an “amazon” style treatment model of physician-patient interactions via email and phone for the physicians that are the true experts for the rare disorder with six month or yearly visits in conjunction with a primary care doc. It becomes a matter of “knowledge management” for you guys. Diagnosis is still a problem but it would simplify treatment.

As for diagnosis you might try listening to whatever odd ideas the patients bring up. I know … it’s hard… but When all else fails they may have found the right idea on the all knowing google.

In my case, the initial misdiagnosis of a lumbar disc herniation by my then family practice doctor meant that I was sent to inappropriate specialists. Who then proceeded to order numerous treatments and tests. The former were ineffective, the latter inconclusive. The net result was that each specialist sent me back to the family doctor, saying either there was nothing wrong with me, or insinuating that I was a malingerer and/or a depressed whiner. The net result of this was that my doctor lost interest in helping me, and I gave up looking for help.

Now mind you, during this time I didn’t realize that I might have an uncommon condition. I simply trusted that the specialists that I saw (75% of which were at academic centers) would keep looking until a reason for my unusual set of symptoms was found. Instead, they became uninterested within 1-2 office visits.

I was finally diagnosed with a peripheral nerve disorder by a rehab specialist, one who took the time to listen to my history and symptoms. Oddly, he was not at an academic center, but instead in a private group practice. And he is a graduate of a Caribbean medical school, though he did work his way up to doing a fellowship at Johns Hopkins.

My experiences have been that academic physicians are no more astute than those in private practice. They just have better medical pedigrees.

What we patients need is a directory of physicians who have good clinical judgment, who know how to stay the course and who aren’t quitters. Would that such a directory existed.

I’m sorry you are having a bad time with doctors. It is probably illogical however for you to lump us all together. I doubt that you had an initial visit with a rare disease to every doctor in the country.

I have had a similar issue with patients who present to my private practice internal medicine clinic. Less than 1% of the time after testing and referrals I tell them i don’t know what they have and recommend they get a second opinion. They look at me like I am crazy. I suppose what they are thinking is either they don’t have anything or they have something rare and strange and don’t know where to go. Often I recommend the local university center. If you haven’t been to the nearest University center, I would recommend you go. The internal medicine department is probably the best place to start.
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The majority of he time it’s okay if your dr is arrogant, obnoxious, or short on time because they are usually right. They went to school to becomer the experts, they have a much better idea of what is wrong that the patient does. They don’t really need your input or insight given your relative level of ignorance.

Until you become a member of this “long tail” I guess. Then you begin to see how different drs respond to not having a clue. Some handle it gracefully and comfort you, some start to avoid eye contact and try and get rid of you faster, some are rude and abrupt and yell at you, some treat you like you have a mental problem. Most can’t admit they don’t have an answer.

When they most need to listen, they become least likely to. It is a blow to the ego not to know the correct answer. When they most need patient input, when they most need to step out of the diagnostic algortithm box and think creatively, they become most likely to end the appt quickly and send you off to another dr. You begin to take a ride on the Dr-go-round.

What is most disappointing, as a scientist, is the absolute lack of scientific thought most of my physicians exhibit. If the answer doesn’t pop out of an easy-bake box they don’t know what to do.

Numerous clues present themselves and leave a puzzle waiting for a solution yet they choose to disregard them and send me out the door hoping my symptoms don’t return. Rather than think a little and figure out the underlying problem, just throw meds at the symptoms.

Even if the patient is just a diagnostic puzzle you guys display a rather sad lack of interest in the more odd puzzles. In science the odd piece of data usually indicates that your theory is faulty and needs to be reevaluated.
In medicine your patient just needs to go away.