She Thought Her Husband Was Being Treated for the Wrong Disease. She Was Right | Hacker News Reader

She Thought Her Husband Was Being Treated for the Wrong Disease. She Was Right

nytimes.com

37 pointsdaegloe22 comments

The problem with articles like this is that that present it as being a de facto justification for "I don't believe the dr".

It's a variation of survivor bias - you don't see articles "s/he thought the dr was wrong! But the Dr was right!" because they obviously don't produce headlines.

Plus if I read it correctly she asked for a second opinion at the request of the first dr. It is common in medecine for a doctor to be defeated or surprised by the symptoms and to refer the patient to a another specialist who has more experience with a particular type of disease.

Yeah, survivor bias was the first thing that leapt to my mind when she mentioned the 'zebra effect'. The doc is 100% correct in saying that this patient almost certainly doesn't have the super rare disease (although maybe he should have revisited that heuristic when the other, more likely diagnoses fell through). He was right the other 9 times he told people their odd-sounding symptoms were just a common disease presenting oddly... but people don't write news articles about horses.

Speaking as an officially-diagnosed zebra (Ehlers-Danlos syndrome), it took a year of doctor searching until I found a specialist who knew what to look for.. and it started with someone in a powerchair I met at a party remarking that my skin felt velvety like his.

Many doctors are bad at conditional probability. [0] 2% of the healthy population is hypermobile, and hEDS is ~1:5000. But P(hEDS|atrophic scars, spontaneous dislocations, 7/9 Beighton score, paralysis attacks) is much higher. There's a weird stigma against zebras seeking diagnoses because you almost have to do your own research to be diagnosed properly.

0. https://opinionator.blogs.nytimes.com/2010/04/25/chances-are...

Yeah, I remember reading something about that in some introductory Bayesian statistics article. They asked a whole bunch of doctors the P(cancer | positive screening test) question and their answers were way off. Which is fair because it's pretty unintuitive, but also not good because they're using that intuition to make life-and-death decisions.

By weird coincidence, I think one of my friends was recently diagnosed with EDS after a long, long search to find out what was actually going on with her.

Some ideas for improvements on the title:

"Her husband went to a doctor. What happened next will leave you speechless!"

"10 times doctors were wrong. Number 7 brought tears to my eyes!"

"The 100 funniest videos of doctors' accidents."

edit: English is not my native language, it's "speechless", I think.

How about "He was lucky to have the insurance he had". A quote from the closing paragraph and (for me) the ghastliest line in the whole article.

This line resonated strongly with me also.

As an Australian it's an alien take on a near-death experience that contemporary medicine can treat, but which requires the foresight of personal insurance to ensure that the individual may obtain that treatment.

"At first everything seemed normal. But then he was lucky to have the insurance that he had. <shocked emoji>"

Unfortunately for the USA that could be said of anyone diagnosed with anything more serious than a cold.

Yeah, that's sad. Luckily the "communism-like" countries over here in Europe do not have problems like this. Always happy to not worry about the costs, when I really have to go and see a doctor.

The title is clickbatie.

The first doctor did consider POEMs but ruled it out. He did however tell them to see another neurologist as he didn't know what else to do and tried everything he could.

This is the correct comment. The story is simply about a complex disease being hard to pin down. In fact everything worked as intended: when not sure, every doctor suggested the patient look for another opinion, which eventually lead to the correct diagnosis.

It's also not very well written / articulated. It's in the style of Atul Gawande, but doesn't compare well.

I wish I read the comments before the story :)

"ruled it out", meaning he wasnt being treated for POEMS and was thus being treated for the wrong disease. Title is accurate, not clickbait.

A title can be accurate and still clickbait.

How is the title clickbait?!

A patient's 30 minutes on webmd doesn't trump a doctor's years of medical training... but neither does a doctor's one 40-minute lecture on a rare condition make them more of an expert on it than a patient with months or years of dedicated research on the topic.

I always wondered why in US doctors rarely consult each other. You come to a different doctor, and they say previous doctor was wrong and they will treat you properly. But they will never call/email the previous doctor to ask why "right" diagnosis wasn't considered.

I remember in xUSSR doctors used to consult each other a lot. Any more-or-less serious diagnosis was made by 2-3 doctors at least (primary doctor is still responsible, but other doctors may help).

Malpractice and arcane billing makes US doctors avoid anyone not their patient.

They're not set up for a revshare.

First point, in my experience Physicians in the UK welcome input from patients about their conditions. They are often insightful, expedite management, and enrich the expereince for all. Now, I'm singing to the choir here I know... but it's normal to repeat scans if someone isn't diagnosed and is deteriorating. The article implies previous PET scan was done, but lesion not yet visible. Follow up scan was performed because diagnosis not resolved +/- insurance issues +/- spouse pressure. Lesion found, diagnosis made.

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