Comment by ladytron | Hacker News Reader

Comment by ladytron | Hacker News Reader

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I recently diagnosed a rare disease of late pregnancy, Choleostasis, in one of my friends at 34 weeks. She had been complaining of itching. Google and reading a bunch of research papers made me 95% sure of the diagnosis. I sent her to the hospital to confirm and get the necessary tests. The doctors there were completely unhelpful. Two of them tried to send her home. I balked, fought the Drs., and asked to see an endocrinology specialist. He walked in and agreed with me after about 5 minutes.

At this point she was admitted and being monitored 24/7. Her OB was in Hawaii and getting back in a few days. I told her straight out to ignore the Drs. And nurses at the hospital. She was only allowed to speak to me or the specialist, and disregard anything the regular staff said.

It amazed me that the staff had a diagnosis confirmed with a test yet they still gave her the wrong information because she did not fit the regular pregnant woman profile they were used to pushing through their assembly line.

Her Dr. got back and delivered the baby the next day as the monitor showed it going into distress. He said the hospital lost 2/3 babies every year from Choleostasis, yet Drs. seldom acted on symptoms and treated it correctly.

Scary.

Btw I'm no Dr. But I can read Google.

Richard Feynman wrote about how when his wife got sick he figured out that she had TB, but because he was very young and a physicist her family and their doctors ignored him and his diagnosis. He acquiesed and did not push, which he later regretted.

He said that only after they had tried many other approaches and wasted time did the Drs come to the same conclusion, but by then it was too late for her.

At that point her realized he was much smarter than regular MDs and never took their word as gospel from that point on.

That story stuck in my head as my friends and family have had medical challenges.

I listen to my doctors, I write down everything they say and then I do my own research later.

I have a relatively rare spinal condition and I've only seen 2 out of about a dozen doctors who knew what it was before they googled it and one of those gave me figures I'd already seen in a research paper I'd read and the other had less knowledge about my condition than I did.

I don't blame them since there are literally thousands of medical conditions and a lot of them fall on the long tail in terms of what they see on a day to day basis.

I'm not afraid of disagreeing with my doctors anymore though since often I know as much about my condition as they do.

It would be better if they didn't affect an air of omniscience sometimes though.

The only reason they found the condition at all was because I had an A&E (ER) Doc tell me to go back to the GP and demand an MRI on my spine, he was a good doc, he knew something wasn't right.

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