Sangye
04-03-2013, 01:31 PM
There is a saying that doctors are taught while learning diagnosis: "If you hear hooves, don't think zebras." This means that you should think of the more common illnesses first, as opposed to thinking every patient has a rare disease. As we know, this also means that those of us with rare diseases might be misdiagnosed for quite awhile.
Today I found that there's a new experimental search engine for physicians called FindZebra (http://findzebra.compute.dtu.dk/). You type in a symptom and it gives you a list of rare diseases that are linked to it, along with a brief description of the disease and how to differentially diagnose it.
Of course I tested many symptoms of Wegs. They didn't list Wegs as a possibility with joint pain, dyspnea (shortness of breath), sinus pain, fatigue, night sweats or blood clots, all of which are not only common with Wegs but might be the first or only symptom. (I had nothing but severe joint pain for months) I notified them via a Feedback link. Check it out. I think this will be a fantastic tool for doctors. Let all of your doctors know about it.
Today I found that there's a new experimental search engine for physicians called FindZebra (http://findzebra.compute.dtu.dk/). You type in a symptom and it gives you a list of rare diseases that are linked to it, along with a brief description of the disease and how to differentially diagnose it.
Of course I tested many symptoms of Wegs. They didn't list Wegs as a possibility with joint pain, dyspnea (shortness of breath), sinus pain, fatigue, night sweats or blood clots, all of which are not only common with Wegs but might be the first or only symptom. (I had nothing but severe joint pain for months) I notified them via a Feedback link. Check it out. I think this will be a fantastic tool for doctors. Let all of your doctors know about it.