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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

#31

Post by blakesterz »

arkades wrote: post #2

> As for Huls, he is finishing up his fellowship at the hospital this summer. Wherever he ends up, he is certain he will find new cases to challenge his curiosity, cases he hopes to solve. No, he won’t, because only early stage residents are given the freedom from economic realities to spend hours digging and thinking through records. Docs aren’t paid for their time, nor even for results - and their employers (read:…

I know the Mayo Clinic has a totally different pay structure for docs, maybe there's other places out there like that as well. I think this is why people go there for answers to hard problems. Docs get paid a salary, they then choose how many patients they see, and that's it. I assume that's also why it can be tough to get an appointment there.

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

#32

Post by rabboRubble »

sungam wrote: post #30

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.

Article said a dermatologist was consulted early on and who failed to make the connection. Doesn’t support your ascertion.

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

#33

Post by sungam »

rabboRubble wrote: post #32
sungam wrote: post #30

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.

Article said a dermatologist was consulted early on and who failed to make the connection. Doesn’t support your ascertion.

Of course it is possible to miss the diagnosis. My point was that this is not an obscure disease that a dermatologist would not know about.

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

#34

Post by aklemm »

huffmsa wrote: post #12
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.

A bunch of hardasses who don't like jokes or people who actually think the BuzzNow content on their Facebook is enjoyable.

Or people who understand the reality of getting stories read.

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

#35

Post by drakonka »

I had almost exactly these symptoms twice in my life, as a kid. It stumped doctors then, too. It was not Schnitzler syndrome: it was not chronic and in the longest case only lasted a few weeks to maybe a couple of months. However, while I never did get a "name" for the illness doctors came to the conclusion that my immune system greatly overreacted to something and went into a crazy state of attack - hives, persistent fever, painful skin, pain all the way through my bones, etc.

I wish I could put a name to what it was - I do not think my case was rare and a name does exist, but I was too young to have been told at the time.

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

#36

Post by arkades »

blakesterz wrote: post #31
arkades wrote: post #2

> As for Huls, he is finishing up his fellowship at the hospital this summer. Wherever he ends up, he is certain he will find new cases to challenge his curiosity, cases he hopes to solve. No, he won’t, because only early stage residents are given the freedom from economic realities to spend hours digging and thinking through records. Docs aren’t paid for their time, nor even for results - and their employers (read:…

I know the Mayo Clinic has a totally different pay structure for docs, maybe there's other places out there like that as well. I think this is why people go there for answers to hard problems. Docs get paid a salary, they then choose how many patients they see, and that's it. I assume that's also why it can be tough to get an appointment there.

Mayo is a bit of a special case. Guwande hyped their fee structure in comparison to private practice, but it’s largely the same as every hospital: the doctor is an employee with an annual salary, the hospital is reimbursed per unit service by payors. Guwande compared them to private practices, where the doctor acts as his own employer, and thus has to maintain their own volume.

The difference is that given their prestige and the number of out-of-state (read: mostly cash-paying) patients, they get much higher reimbursement than most places and can afford not to push the patient mill so hard. Normal hospitals have a patient base that is mostly insured or, if uninsured, the impoverished kind, not the globe-trotting wealthy kind. So their reimbursement is negotiated with insurers, so... they have to push the mill hard.

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

#37

Post by curlcntr »

arkades wrote: post #2

> As for Huls, he is finishing up his fellowship at the hospital this summer. Wherever he ends up, he is certain he will find new cases to challenge his curiosity, cases he hopes to solve. No, he won’t, because only early stage residents are given the freedom from economic realities to spend hours digging and thinking through records. Docs aren’t paid for their time, nor even for results - and their employers (read:…

There's an analogy here for software and engineering too. Getting to root cause and finding solid solutions - takes curiosity, energy... and time.

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

#38

Post by cariaso »

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…

> many more are not.

True, but

https://en.wikipedia.org/wiki/Sci-Hub

https://sci-hub.tw/

sad that it needs to exist, but good that it does.

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

#39

Post by jdmichal »

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…

The only appropriate definition of elevated is higher than normal for that patient. Unfortunately, doctors rarely have a baseline to work from, so they use statistics instead. A relative of mine had a PSA test that read statistically normal. Luckily he looked at the actual number and saw that, while it was within statistical normal, it was in fact higher than any other prior reading for him. Further testing came up positive for prostate cancer. If he hasn't been paying attention, that would have been another year of cancer until the next check.

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

#40

Post by erric »

seanmcdirmid wrote: post #25
arkades wrote: post #7

Earlier quoted context omitted.

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.

https://en.wikipedia.org/wiki/Red_envelope

I’d never heard of this before.

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