Every time I read about one of these wacky medical mysteries, it always strikes me that all a doctor needed to do was some Internet research (heck, even Googling the symptoms) to find out about some rare disorder that their patient might have). Then I realized what doctors need is a SDMB - post the mystery symptoms and what you’ve tried, then see what thousands of other doctors have to say about it.
Does such a resource exist?
I’m not a doctor, but I don’t think it’s that simple. There’s no easy one-to-one mapping between symptoms and diseases; hundreds of diseases might have the same symptoms, and different people will exhibit different symptoms for the same disease. Furthermore, people aren’t always very helpful when describing symptoms—they might list unrelated things that aren’t symptomatic of anything, or fail to tell the doctor about things that have been chronic and that they’ve gotten used to. The TV show “House” is instructive on these points: he’s supposed to be a diagnostic genius, he clearly knows about many rare diseases and their symptoms, but he always makes at least one misdiagnosis due to variance in symptoms or misinformation from the patient. (Not that I’m saying the show is realistic, but that aspect of it illustrates the points I’m trying to make.)
For difficult cases, there are medical journals. They contain much more detailed information than would be available on the general internet.
I have heard there are computer programs that will take symptoms and patient information as inputs and output lists of possible conditions with probabilities. From what I understand, they are used in Europe but have not caught on in the US.
The general internet may be used as access path to the article published in medical journals. One publicly accessible place to search for articles in medical journals is the PubMed database at the national library of medicine (http://www.ncbi.nlm.nih.gov/). You can search there for titles and summary of articles written in biomedical journals. Most journals provide their full articles in electronic form - if the institution you’re part of holds a subscription to the journal, you may be able to directly download the article, otherwise you may either purchase the article or obtain a copy through inter-library loan from a library that has a subscription.
However, you would rarely directly search for symptoms, as caterba described, but rather check up the facts on a hunch - You have a suspicion that it might be a particular disease, and check the research data to find the details of the spectrum of symptoms associated with this disease, as well as for information on what other diseases show similar symptoms .
my wife is a doctor and she has belonged to several “Doctors Web” type networks, where they have message boards. However, there was no medical stuff asked, usually “I need a locum for the august holidays” or “I have a holiday house to rent” type notices.
The sort of thing you were referring to was done in house in the practise meetings where difficult cases could be raised.
Doctors are very shy about revealing, even to each other, that they dont know everything. Part of it is loss of reputation, losing patients etc. There is also a potential legal problem “One of my patients has just lost a leg, any ideas?”, will not look very good in a court of law when the patient sues.
I have seen a very busy vBulletin-based message board for optometrists.
I run a message board for urban planners – not doctors, mind you – and I found that most old-school planners prefer mailing lists/listservs. There is a perception among them that mailing lists are somehow “more professional” than forums. Also, there’s a belief among some that posting to a mailing list is always an appropriate work-related use of the Internet, while posting to a forum – even if it is a professional-related Web site – is seen as non-work-related personal surfing.
MedLine is a for pay site used by doctors and hospitals for quick research.
CodeRN2 is a webring for healthcare providers. There are others, I just don’t have links at the moment.
Bulletin boards like you describe exist and are used by a small group of specialists in a given area. I know of examples for emergency medicine. Most doctors do not use such groups.
There is one that I frequent on a daily basis (I’m in Emergency Medicine, like Dr_Paprika says). It was originally formed for pre-med and medical students, but has since expanded to include residencies from all specialties. There are several threads in the EM forum (I rarely venture to the other fora), that have been linked to from other sites and have become hugely popular (similar to LOTR thread and Slashdot or Fark or whatever, but on a smaller scale).
We do occasionally discuss interesting cases.
There are several email lists for veterinarians. I’ve participated in one since its inception. It is moderated by a UK small animal practitioner, and has a “public” and “private” section here: http://e-vet.com/
I subscribe to an e-mail list for pathologists. Members will ask questions about difficult case workups, and a few will post detailed histories and photos, asking for differential diagnoses*. A lot of the list traffic though relates to general practice questions, rants and occasional non-pathology effluvia.
There are also multiple specialty and general medicine websites which can be helpful in providing quick answers, directing research and/or providing photos to clarify a diagnosis.
*the quality of the suggestions varies widely. And I’d be hesitant about relying on semi-anonymous colleagues for a tough diagnosis. “Well, the guys on the list thought it was carcinoma…” :rolleyes:
There’s a SDMB for doctors where, if a doctor asks a question that should be answered by a layperson, moderators close the thread.