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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

#91

Post by nitrogen »

jessaustin wrote: post #47
arkades wrote: post #8

Earlier quoted context omitted.

What? The doctor’s visit is the cheapest part of healthcare. Procedures cost far more, and pharm far more again. Perhaps you’re outside of the US, though I can’t think of a country where this isn’t true.

Don't forget diagnostic scans and tests. Those are quite expensive. However GP is proposing a service that doesn't actually exist now: paying a medical expert to spend a lot of time considering a challenging case. It would have obvious benefits, so we shouldn't dismiss it out of hand just because it would be too cheap.

There was a now-defunct attempt at this called MetaMed: https://en.m.wikipedia.org/wiki/MetaMed

I'm curious if any others have succeeded.

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

#92

Post by arkades »

nitrogen wrote: post #89
arkades wrote: post #83

Earlier quoted context omitted.

> Probably there are other professions in which one gets better service if one has an inside connection, but this situation really speaks ill of how medicine is practiced. Having a doc in the family is a mixed blessing at best. You can get priority treatment, and the benefit of your family members full attention. On the flip side, all the docs I know that aren’t fools or morons don’t treat their own family for anythi…

The value I would see in having a physician as a close relative is in learning how to communicate effectively with other physicians. Then one could in theory need fewer visits to their own doc to get to the bottom of a problem.

That’s actually a problem. When I myself see a doc, I make a point of being as colloquial about it as possible. Part of our training is about taking what people say and converting it into technical symptoms; when people start to “communicate effectively” it heavily biases us towards certain diagnoses. The more intelligent/educated the patient the more likely we are to take one of their word choices at face value.

Personally, all I ever want from a patient is a clear timeline of events, their best attempt to articulate what they felt, a list of scripts, and old medical records (especially imaging.) The patient that can give me that has made the task of helping them 1000x easier.

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

#93

Post by beagle3 »

nicolashahn wrote: post #71
mychael wrote: post #70

I have zero medical expertise, but it sounds like this situation could be improved with software. Given a database that contains an exhaustive list of every illness and symptoms: illness symptom diagnosis_symptom_set ------- ------- ---------------------- id id id name name symptom_id (FK->symptom.id) illness_id (FK->illness.id) (Pseudo SQL) SELECT diagnosis.name as name FROM diagnosis_symptom_set diagnosis_sympt JOI…

Much easier said than done. There are several startups out there attempting to achieve something like that. The issue isn't in the technical difficulty, but the bureaucracy and red tape involved in getting the patient data, getting enough illness/symptom data to make diagnoses possible (which is a lot ), proving to the hospital that it's worth the effort to adopt the platform, and making a solution agnostic enough to…

The issue is also the technical difficulty. There is huge variance and the number of variables to consider is also great.

A computer/database is a better tool for the job, of course, but the balancing act between false negative and false positives is extremely hard.

See, e.g. the (very) simplified case of base rate fallacy[0] ; There is an inherent information problem in doing diagnosis, that a large database and fast search do not address.

[0] https://en.wikipedia.org/wiki/Base_rate_fallacy#Example_1:_D...

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

#94

Post by jessaustin »

jacquesm wrote: post #86
jessaustin wrote: post #84

Earlier quoted context omitted.

I get to drive on most roads without paying, but I wouldn't say that the roads are "free"?

Compared to toll roads they are free...

We've uncovered a potential ambiguity in the original phrasing of "free health service". Could the now-dead response to that comment have been highlighting this very ambiguity?

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

#95

Post by beagle3 »

Someone wrote: post #77

Surprisingly, if I google ”hives elevated levels of IgM” or ”hives elevated IgM” , ”hives fever elevated IgM” or several variations, the top hit is https://rarediseases.org/rare-diseases/schnitzler-syndrome/ . For ”hives elevated level of IgM” and ”hives IgM” , that’s the second hit. Does Google react that fast to nytimes articles?

It's possible and even likely that Google did react -- it is enough for people to google "schnitzler's syndrome" and click the link to rarediseases.org -- as google does track which result people choose, and rank it higher for the future (for different searches as well).

It's also likely that "hives elevated IgM" is the right search in retrospect; Before diagnosis, the search would likely have been more along the lines of "hives weight loss elevated leukocyte elevated IgM fever rashes at night" which likely didn't point as easily to schnitzler's syndrome (or maybe it did, I don't know).

The info was distilled and purified for this article. It likely wasn't that well presented to start with - in my experience, that's the case for many rare diseases: once you know what it is, it is clear that in retrospect you should have seen it all along. But that's just 20/20 hindsight.

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

#96

Post by Azeat »

DoreenMichele wrote: post #65
sungam wrote: post #33

Earlier quoted context omitted.

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.

But what you actually said is this: if the patient had been seen by a dermatologist I would be surprised if this would have been missed. I was diagnosed in my mid thirties with a genetic disorder. It is a more recently recognized milder manifestation of a well known condition. Prior to that, I was basically treated like a hypochondriac and routinely accused of being lazy. I have read a bit about the difficulty in get…

I've had a similar experience. I had symptoms for which I saw several doctors and eventually went to ER and was repeatedly just told by them and everybody else "it's just stress." Finally, I went to a specialist and they diagnosed my condition accurate and immediately. I don't even have any side-effects any more because now that I actually know what my condition is, I changed my diet accordingly. No drugs or anything, all I needed was someone to tell me what my condition is and that has improved my life immensely.

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

#97

Post by jtbayly »

tejtm wrote: post #87

Hi HN Clinical research types may find this still imperfect tool to be of use none the less. https://monarchinitiative.org/disease/MONDO:0018304#phenotyp... Full disclosure: guilty guilty guilty

Is it just me or is this site exactly what several other people in the comments here are proposing as a major part of the solution?

I’m not sure, since others are basically saying it’s too hard to do.

Cross referencing conditions and diseases along with the scientific and common names for things could indeed be very useful!

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

#98

Post by jtbayly »

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.

Two different dermatologists, actually.

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

#99

Post by ianai »

arkades wrote: post #92
nitrogen wrote: post #89

Earlier quoted context omitted.

The value I would see in having a physician as a close relative is in learning how to communicate effectively with other physicians. Then one could in theory need fewer visits to their own doc to get to the bottom of a problem.

That’s actually a problem. When I myself see a doc, I make a point of being as colloquial about it as possible. Part of our training is about taking what people say and converting it into technical symptoms; when people start to “communicate effectively” it heavily biases us towards certain diagnoses. The more intelligent/educated the patient the more likely we are to take one of their word choices at face value. Per…

That’s really helpful to know.

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

#100

Post by sungam »

beagle3 wrote: post #58
sungam wrote: post #33

Earlier quoted context omitted.

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.

I agree that there are many missed and incorrect diagnoses made not least by specialists.
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