> Huls hadn’t heard of Schnitzler syndrome, either. He came upon it by using the database PubMed to look for a disease that matched the patient’s symptoms. He made a list of her symptoms and abnormalities. To get the full picture, he combed through her earlier electronic medical records, now archived in an old electronic warehouse, and found that her symptoms had started maybe a decade earlier. Then he looked for a disease that fit. It took hours before articles on this strange disorder began to appear. As he read, he suspected that she had it.

Is this database open? If so, anyone in the same situation as the daughter in this article could spend the hours, rather than hoping a professional will. Not to self-diagnose, but to narrow down the list to a number of candidates the professionals are willing to look through. Sure, what takes the M.D. 6 hours might take me 40 hours, but if the alternative is 10 years of suffering for someone I love, it's easily worth doing.

On a similar note, I have combed through a bunch of research on a particular type of medication recently, and I hope the fruits of my labour will pay off. Time will tell. Either way, I have learned a lot.

Once you are dealing with somethibg that is difficult to diagnose and/or resistant to treatment (I might argue the two are the same thing on a fundamental level), a surprisingly large portion of medical care turns DIY. They never tell you this but unless you are actually made of bucks and can visit the best specialists in the world, it won't take long until you know more than the doctors you meet about the specific problem you're dealing with.