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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

#51

Post by Alex3917 »

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…

> You’d have to go to someone that doesn’t take your insurance at all

There are some doctors at teaching hospitals who specialize in diagnosing rare diseases and don't take insurance for this reason.

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

#52

Post by datashovel »

My guess is the doctors who don't spend extra time trying to solve the case probably shouldn't be paid for the time separately as is being suggested here.

It would appear to me that they have already lost the innate curiosity (if they ever had it) that made them want to become doctors in the first place.

Or they're not confident enough in their ability. Doctors are already paid substantially compared to most other professions, so for them to not put in extra time on the exceptional cases makes me feel they probably feel entitled. Too much so to have any impact on the rare cases.

The doctors who could realistically find the solution are the ones who will likely want to take the case on for free.

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

#53

Post by salgernon »

rando444 wrote: post #42
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.

This is from New York Times Magazine. Think something like GQ, Vanity Fair, Rolling Stone. It's not meant to be a news article, it's a story.

Further, it’s a popular recurring story arc that appears in many popular magazines (Discover, which for some reason I always buy when flying has a regular series) and in many books (eg, ``Awakenings’’ by Oliver Sacks)

Whether this particular submission meets the criteria for a HN discussion could be debated, although it does seem to have generated at least some useful comments.

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

#54

Post by netheril96 »

jessaustin wrote: post #46
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…

You're right that it's difficult for physicians to "turn it off". The contractual requirements you reference, however, are basically unenforced. The only way a physician will get "caught" charging more than agreed is if the patient calls the insurer to complain. Presumably you wouldn't do that to her after she saved your life.

> Presumably you wouldn't do that to her after she saved your life.

Oh, you grossly underestimate what people are capable of. At least in China there are many reported cases of such horrible patients. Maybe US being a developed country have fewer these people, but definitely not zero.

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

#55

Post by bluesign »

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 main problem here is human body works in mysterious ways.

We are by definition reacting different, and unfortunately statistics are not helping on this case.

Basically, we have:

- too many illnesses (I guess 10% of top common health problems, covering 90% of all problems)

- for each illness, we have N number of symptoms (which unfortunately all or only a subset of this can occur)

- then we have fake symptoms (statistically out of threshold values but we are living fine with them)

this is generating a big number of combinations.

With this much combinations, it is requiring extensive amount of tests.

As everything health is also optimized for the greater good. Which requires optimum cost management.

So basically medicine today, with statistical approach, is happy to skip 1%, if it can fix 99% with 90% less cost.

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

#56

Post by arkades »

jessaustin wrote: post #46
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…

You're right that it's difficult for physicians to "turn it off". The contractual requirements you reference, however, are basically unenforced. The only way a physician will get "caught" charging more than agreed is if the patient calls the insurer to complain. Presumably you wouldn't do that to her after she saved your life.

> Presumably you wouldn't do that to her after she saved your life.

I wish that were so, but disease is not confined to the reasonable, the rational, the kind, the respectful, or the grateful. On the contrary, the stress of disease and it’s associated burdens (social, financial, psychological, etc) tends to diminish those qualities in even the best of us.

Harvard did a huge study on malpractice suits a while back. They found that most medical errors that caused the death of a loved one did not result in suits, and most suits did not originate from medical errors. That is to say, the good or ill you do a patient isn’t the reason they sue.

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

#57

Post by arkades »

stevenh wrote: post #50
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.

Isn't this what concierge doctors offer?

Some. Some push the same old practice model but with reasonably cheap prices, so they can keep their old patient base and make their income off the slightly higher billings and the reduced overhead of eliminating your billing (read: calling the insurer and arguing) staff.

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

#58

Post by beagle3 »

sungam wrote: post #33
rabboRubble wrote: post #32

Earlier quoted context omitted.

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.

Anecdata, but... I personally know so many missed cases (from “mundane” cases like mono, to the more serious cases like neuroblastomas) that were diagnosed by googling or a guess from a Med student after being dismissed by a specialist, that leads me to suspect the problem is inherent, rather than the occasional miss.

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

#59

Post by linkmotif »

jotm wrote: post #45
erric wrote: post #40

Earlier quoted context omitted.

https://en.wikipedia.org/wiki/Red_envelope I’d never heard of this before.

Lol, that's exactly life in Eastern Europe/ex-USSR. There's socialized medicine, but if you want better service, you have to bring a gift (whisky, chocolate, money, the latter is always desirable). Not just hand cash over, that's disrespectful nowadays.

My grandmother was a pediatrician in Kiev in Soviet times. Her salary was about on par with anyone else, but she got tons of gifts.

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

#60

Post by DoreenMichele »

gaius wrote: post #24
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.

Or like internet publications are killing dead tree ones and then having trouble getting monetized because of the ongoing ad blocker wars, so publications are desperately trying tricks to be more interesting.
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