People are really bad at doing their own research and diagnosing themselves.
I'm much more medically knowledgeable than the average person. I'm reasonably smart, and interested in the subject. And then I married a doctor.
But even given all of those things, I'm very bad a diagnosing myself. I once swore that I had Giardia. I read dozens of papers and case studies. A close family member of mine was also having some similar GI symptoms at the time, and I even calculated the probability that our symptoms were independent.
After that was ruled out from testing and I kept having stomach pain, I did more research. I was pretty sure I had stomach cancer.
Eventually I got scoped--gastritis. Took a PPI for a little bit and it cleared right up. Gastritis wasn't even something that I had considered. It showed up in my search results, but because it wasn't a serious problem, I didn't focus on it.
My sister had an experience where she went to the doctor multiple times because she had felt something “off” about her health, fatigue, small aches in her chest.
Multiple times she was turned down for breast cancer screenings, she was told that she was too young (33 at the time). It was not until she had requested that the doctor write a note of their denial, along with reasoning, that they finally gave her some screenings.
It was stage 2(3?), it had affected several lymph-nodes, but she was lucky that she persisted and did not just say “oh ya it’s fatigue”. When I ask her about how she knew, it’s always the same response, that it was just a feeling, that she knew something was not normal.
Yeah it's definitely possible. And it's terrible if you or someone you love is in that situation. But for the vast majority of people feeling off, tired, and some small aches is going to be nothing.
There are costs to testing, financial and otherwise. For example you take someones family history, and other risk factors into account. There is a 1/100,000 chance that they have cancer. Then you add in the symptoms, fatigue, and minor aches and pains. That brings it to a 1/50,00 chance.
We don't have the money, technicians, or machines to run an MRI on everyone who shows up to the doctor with a problem that has a 1/50,000 chance of being cancer.
Then for many tests, with such a low prior probability, a positive test has a higher chance of being a false positive. So now you patients with massive anxiety out over a positive that has high chance of being a false positive. And you need to send them or further more invasive anymore expensive tests, that have real risks of harm.
> We don't have the money, technicians, or machines to run an MRI on everyone who shows up to the doctor with a problem that has a 1/50,000 chance of being cancer.
A guy launched a car into space; I think we have all this stuff but we — as a society — just don’t find the business case for “poor people being alive” very compelling.
There was a period where doctors would run every test on the list.. They stopped this because even if everything were free, each test has a false positive rate with a psychological cost to the patient. If anything the US has a problem with not accepting that everyone is going to die and asking them to go on to a road makes this more likely, (thus costing more than the value of the appointment.)
Being told that a doctor won’t do a test because it’s not worth it has a psychological cost that is higher than being told that the screening test came back positive and they need to run some more tests.
You are incorrectly calculating the “value of the appointment” from precisely the wrong viewpoint. Remember that healthcare is about the patient’s health, not the bill.
No, you're missing the point. Over treatment is a serious problem in healthcare. There is always some risk of iatrogenic harm, and for many tests the risks outweigh the benefits. Many tests don't even have a simple positive or negative result: often the outcome is inconclusive.
This is such a wild non-sequitur! A single person doing a single wildly expensive thing is not comparable to hundreds of thousands or millions of people doing a far less expensive thing. The orders of magnitude don't cancel out; the 5-6 orders of magnitude in number of "people doing expensive thing" outweighs the 3-4 orders of magnitude difference between the costs of the things you are comparing.
It's also just so wildly irrelevant to the topic at hand
This is why proper differential diagnosis skills is important - something a layman would not understand. You must consider ALL possible conditions that your symptoms match, and then work your way from the most common to the most unlikely. AI is remarkably pretty decent at doing DDX.
A big challenge is that most doctors can't operate outside of the most common conditions and differential diagnoses of their specialty and have to punt patients.
Of course, to the doctor's defense, patients are not an easy population to work with, "Why can't I eat candy and cake 3 meals day and my diabetes is getting worse?"
There have been clinical decision support systems that were pretty decent at doing DDX for decades, well before the current crop of AI LLMs. The issue is getting relevant data about patient history, symptoms, signs, etc into the system and then convincing doctors to actually use it. For most simple cases, using any form of clinical decision support (whether it's based on AI or simpler deterministic algorithms) just slows them down and they don't have time to waste.
As someone also in a similar position to you, I think the challenge for the non-medical community is that medicine/health frames things in terms of some entity, instead of failures in a systemic set of interconnected processes.
"I HAVE cancer. I HAVE this autoimmune condition. I GOT a cold."
So people are in search of a label and the "thing" to get rid or fight, but imagine if all technology problems were labeled similarly. Rendering-itis. Memory-itis. PCI-Bus-itis. Imagine someone coming to a person going, "I think I have keyboard-itis, because when I type a key into the keyboard, it takes a couple seconds for the character to show up on the screen." When in reality, as the engineer, your intuition is that there's something amiss in the auto-complete microservice. Perhaps that service needs to be scaled up or something else is DOS'ing the service, Perhaps the autocomplete service is running across the country instead of the same datacenter, so you know which tests to run to isolate and solve the source of the problem. Medicine is basically that now.
Medicine has developed to the point where they have several hammers where if bloodwork == X || symptoms == Y, then A or B or C drug/procedure. So doctors are mostly the level 1 engineer after the level 1 tech support rep on a script.
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Most medicine is merely a collections of latin labels, and unless the conditions map to well-known treatments, most doctors are in the dark. You were lucky that you responded to PPIs.
Gastritis is "inflammation of the GI lining" and the use of a PPI, is similar to a common second-line option like "reset the software settings" after the first suggestion of "reboot your computer." They scoped you, because they had no clue what was up. Scoping is basically like lighting up the debugger. They go in with a camera, and basically found nothing but inflammation, thus came the PPIs. They were mostly ruling out cancer or growths or other weird things like outside items. (ie ate a non-digestible item).
Basically, doctors are relying on pharmaceuticals to help out for a couple days/weeks, while the body addresses things on their own such that they don't become necessary anymore. That's probably most medicine. As most pharmaceuticals are symptom management, doctors really only have tools to help someone manage symptoms or alleviate the pain. They are just practiced in that troubleshooting process, the way tech folks get deep into the stack of the architecture of computing, networks, etc and can troubleshoot issues in the tech stack.
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The way that there's only a handful of the most brilliant engineers who deeply understand the stack top to bottom in such a way that they can thread their way to "that's a problem in this specific subsystem and the latest change now makes the datastructures exceed the L3 cache size of that node and that's causing an additional 10 millis degradation." There's really only a handful of doctors who are intimate enough with the all the subsystems of the body to be able to drill into what's going on with a person, otherwise most operate on rules and mentally null pointer when they run into something that doesn't fit into their flow chart.
Outside of very specific genetic conditions, incredible amounts of sickness out there could be alleviated by supporting the biochemistry (limiting reagents) of the body, so its processes can keep it in tip-top shape.
I'm much more medically knowledgeable than the average person. I'm reasonably smart, and interested in the subject. And then I married a doctor.
But even given all of those things, I'm very bad a diagnosing myself. I once swore that I had Giardia. I read dozens of papers and case studies. A close family member of mine was also having some similar GI symptoms at the time, and I even calculated the probability that our symptoms were independent.
After that was ruled out from testing and I kept having stomach pain, I did more research. I was pretty sure I had stomach cancer.
Eventually I got scoped--gastritis. Took a PPI for a little bit and it cleared right up. Gastritis wasn't even something that I had considered. It showed up in my search results, but because it wasn't a serious problem, I didn't focus on it.