Need a site that focuses on diagnosis of really difficult cases.

February 16, 2016 9:53 PM

I am writing this while at the Mayo clinic trying to find a diagnosis for my father who is very ill. After 2-3 misdiagnosis all from extremely reputable and knowledgeable doctors my family is nearing the end of our rope. I feel like we need a bulletin board or way of posting to a site where you can get informative off-the-cuff opinions from health detectives like the New York Times Diagnosis section. Another example is this DIY geneticist who found her gene mutation by seeing a photo of an Olympic medalist, link to Pro Publica story here which is fascinating. Is there anywhere to post a medical story and perhaps get some interesting new leads? With immense love and thanks, ejourdan
posted by ejourdan to Health & Fitness (6 answers total)

I heard promising stuff about the site Crowdmed, which tries to crowdsource diagnoses, and the people include doctors and diagnosticians. There was a Reply All episode about it.
posted by suelac at 10:32 PM on February 16, 2016 [4 favorites]

I recently got a couple of second opinions through Advance Medical. It's not quite the crowdsourcing option you're looking for, but it's a quick way to get a few more qualified eyes on your case and they do ALL the legwork for you. You can handle everything through email other than the initial conversation. My insurance paid for it.
posted by town of cats at 10:48 PM on February 16, 2016 [2 favorites]

I was also going to suggest Crowdmed. You can get your money back if none of the suggestions are correct and it's all within a certain timeframe. Metafilter has helped me a ton and I realized I had POTS after tons of doctors couldn't find anything. I also diagnosed a lot of my own stuff from extensive Googling (lookin' at you nasty gallbladder that tested normal until they sent it to the lab.)

Keep a symptom journal, a food journal, a sleep journal, a med journal, and all the current tests and results. Start right now if they haven't already.
posted by Crystalinne at 11:21 PM on February 16, 2016 [2 favorites]

Look into the Undiagnosed Diseases Network. It's a National Institutes of Health project. Call the phone number on the page I linked and start a conversation. There are a few other useful resources linked from that page.

Be well.
posted by late afternoon dreaming hotel at 9:14 AM on February 17, 2016 [3 favorites]

I follow this guy on twitter. He has an interesting blog, including worksheets that you might find useful.
posted by Michele in California at 11:10 AM on February 17, 2016 [1 favorite]

Response by poster: All great ideas. Thank you so much. Best of health to all...
posted by ejourdan at 2:07 PM on February 17, 2016