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Her Various Symptoms Seemed Unrelated, Then One Doctor Put It All Together

nytimes.com

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Re: Her Various Symptoms Seemed Unrelated, Then One Doctor Put It All Together

#21

Post by huffmsa »

ghusbands wrote: post #17
lawl wrote: post #10

Earlier quoted context omitted.

I'm not sure why you were downvoted. That title is pretty much the definition of clickbait.

Maybe because sarcastic quips are a poor way to get a point across. Simply pointing out the title is clickbait and perhaps suggesting an alternative would be useful.

Who am I to say what a good title is? I'm certainly not the editor or the NYT (no one is, they fired their editorial staff).

But I am the person to say "this title reminds me of tropy drivel which I've seen over the past few years, and I'll supply the appropriate subheading."

Re: Her Various Symptoms Seemed Unrelated, Then One Doctor Put It All Together

#22

Post by phkahler »

kqr wrote: post #13

> Huls hadn’t heard of Schnitzler syndrome, either. He came upon it by using the database PubMed to look for a disease that matched the patient’s symptoms. He made a list of her symptoms and abnormalities. To get the full picture, he combed through her earlier electronic medical records, now archived in an old electronic warehouse, and found that her symptoms had started maybe a decade earlier. Then he looked for a d…

My first reaction to these things is that there should be a large database of diseases and symptoms along with some statistics about how strong the correlation is between the disease and symptoms. I don't mean "database" like pubmed. I mean something more machine readable with consistent coding so a symptom might be "elevated IgM" in english. The trick is coding something like that with consistent names for the tested item and consistent definitions of "elevated". Perhaps the definition of elevated would depend on the disease?

One should be able to then filter the disease database based on symptoms. Doctors seem to do this in their head, but they are not comprehensive stores of information. I suppose the problem is in the encoding of symptoms, it's not that simple.

Re: Her Various Symptoms Seemed Unrelated, Then One Doctor Put It All Together

#23

Post by ghusbands »

huffmsa wrote: post #21
ghusbands wrote: post #17

Earlier quoted context omitted.

Maybe because sarcastic quips are a poor way to get a point across. Simply pointing out the title is clickbait and perhaps suggesting an alternative would be useful.

Who am I to say what a good title is? I'm certainly not the editor or the NYT (no one is, they fired their editorial staff). But I am the person to say "this title reminds me of tropy drivel which I've seen over the past few years, and I'll supply the appropriate subheading."

Something like that would have worked better, indeed. To be clear, the HN guidelines for commenting [1] say "don't be snarky".

https://news.ycombinator.com/newsguidelines.html

Re: Her Various Symptoms Seemed Unrelated, Then One Doctor Put It All Together

#24

Post by gaius »

leroy_masochist wrote: post #11

TLDR: It was Schnitzler Syndrome, a rare autoimmune disease. Clickbait titles and suspense-novel narrative structures in articles like this really annoy me for some reason. Just get to the point.

Right; it's like someone has watched too many episodes of House and thinks that's how doctors are/should be.

Re: Her Various Symptoms Seemed Unrelated, Then One Doctor Put It All Together

#25

Post by seanmcdirmid »

arkades wrote: post #7
ianai wrote: post #4

Earlier quoted context omitted.

Is there a way to actually request a specific doctor have some time dedicated to figuring your case out at your expense? i.e. "Please do more troubleshooting for me above what insurance pays." I like your idea - but I fear the industry might have already ruled it out. -edit- Granted, I've done this in my own life by going to specialists at their own offices/outside of a hospital or medical group.

Unfortunately, no. Your doctor is contractually bound to the insurer’s fee structure; they can’t take an extra penny off of you. You’d have to go to someone that doesn’t take your insurance at all (or just don’t tell them you have that insurance). The side effect of all this, honestly, is that doctors stop learning how to turn off 7-minute-mode. When it comes to very serious problems, it pays to go to a practice that…

Almost makes the red envelope culture in Chinese hospitals seems appealing.

Re: Her Various Symptoms Seemed Unrelated, Then One Doctor Put It All Together

#26

Post by rinze »

Amygaz wrote: post #16
kqr wrote: post #13

> Huls hadn’t heard of Schnitzler syndrome, either. He came upon it by using the database PubMed to look for a disease that matched the patient’s symptoms. He made a list of her symptoms and abnormalities. To get the full picture, he combed through her earlier electronic medical records, now archived in an old electronic warehouse, and found that her symptoms had started maybe a decade earlier. Then he looked for a d…

Pubmed itself is open (just google "pubmed"). However, while many scientific publications are open access, many more are not. I find that google scholar does a pretty good job at searching. I typically start with google before using pubmed. Then you need a place to store your papers. I like to use F1000 workspace. If your doctor is not helping you, get a new one, preferably in a big city with a university-affiliated…

> I find that google scholar does a pretty good job at searching. I typically start with google before using pubmed.

It does, plus it has the great advantage that it will find a PDF of the paper posted by the author (or someone else) on a webfolder somewhere. Pubmed only links to the "official" paper publication, plus some open repositories in some cases.

Re: Her Various Symptoms Seemed Unrelated, Then One Doctor Put It All Together

#28

Post by pjc50 »

phkahler wrote: post #22
kqr wrote: post #13

> Huls hadn’t heard of Schnitzler syndrome, either. He came upon it by using the database PubMed to look for a disease that matched the patient’s symptoms. He made a list of her symptoms and abnormalities. To get the full picture, he combed through her earlier electronic medical records, now archived in an old electronic warehouse, and found that her symptoms had started maybe a decade earlier. Then he looked for a d…

My first reaction to these things is that there should be a large database of diseases and symptoms along with some statistics about how strong the correlation is between the disease and symptoms. I don't mean "database" like pubmed. I mean something more machine readable with consistent coding so a symptom might be "elevated IgM" in english. The trick is coding something like that with consistent names for the teste…

This was one of the early areas of AI research, which seems to have gone nowhere: https://en.wikipedia.org/wiki/Mycin

Re: Her Various Symptoms Seemed Unrelated, Then One Doctor Put It All Together

#30

Post by sungam »

Schnitzler syndrome, whilst rare, is well known to dermatologists and is in the differential diagnosis of chronic urticaria (hives). Not to take away from the resident that made the diagnosis but if the patient had been seen by a dermatologist I would be surprised if this would have been missed.
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