Yep, it's also disheartening to see them holding a printout of one of the few articles available online, which I already know is pretty out-of-date and down-right wrong in places.
Doctors know very well that a person with a specific rare disease has a lot more incentive to have spent in-depth research on it than they did when they last ran across it...
I mean, these days there are whole forums dedicatd to a specific disease. If you told the doctor, "You know, I ran across a forum for people like me, a lot of people have said they had very bad results with (x) despite the clinical trials, so I would prefer (y)"...you don't think they would listen to you?
Where is this attitude coming from?
Recently, my sister (same condition) drove a couple hours to see a specialist who had obviously not read her file or done any research and made some truly awful suggestions (one that could certainly have lead to her death if she had followed it). He billed her for the time.
Doctors are like coders, some are orders of magnitude better than others. Some are so bad, they have a net negative impact on your health.