[throwaway205826]

A few years ago I got some kind of brain illness. Doctors were unable to come up with a strong diagnosis, which is apparently quite common for such cases.

One of the effects of the illness was that I essentially became stupid. I couldn’t focus on anything (even trivial activities like watching television), I couldn’t compose emails, I would get disoriented easily. It was absolutely terrifying not knowing whether or not my mind would come back. At the time, I would have preferred having a disease like cancer because at least I would know what I’m dealing with. Eventually I did start to get better. Like the author, I think I’m probably not quite back to who I was before getting sick.

A couple things I learned from my interaction with the medical system - 1. Like any other industry, 90% of medical “experts” are totally incompetent. 2. The state of diagnostics is pretty abysmal. So much of medicine is completely nonscientific guesswork. Most doctors aren’t even aware of the latest diagnostic developments in their own fields. Think about the people you know who learned Java in college and then never learned another programming language; chances are, your doctor is that kind of person.

[AnIdiotOnTheNet]

> 1. Like any other industry, 90% of medical “experts” are totally incompetent.

Yeah, I've come to the same conclusion. When I was a kid it took 2 years to diagnose my, frankly quite textbook, hypothyroidism. Know who first diagnosed it? A friend of my mother's who worked the toll booth at the airport. Her dog had it, you see, so she recognized the symptoms. My mother had to go full Karen mode on a doctor to get them to order the simple blood test that would confirm it.

[bhickey]

A few years back my father had a valve replacement due to childhood rheumatic fever. At ten days post op he woke up with an unstable heart rhythm and went to the hospital. They gave him drugs to get the rhythm under control, which failed. After two days, I get a call from my sister, a neurologist, telling me to get to the hospital immediately. When I arrived, he was short of breath and in a bad way. At the hospital my sister took one look at his EKG and remarked that he was at risk of going into tamponade at any moment. She asked if anyone had bothered to do an echocardiogram when he was admitted -- they hadn't. She just about chewed out his nurse and they ran the echo. Lo and behold, he had pericardial effusion: a half litre of fluid was compressing his heart. They rushed him into the catheter lab, drained the fluid and his symptoms resolved immediately.

On Monday I was having coffee with a coworker and mentioned that my father had a valve replaced and he'd been in the hospital over the weekend. My coworkers immediately remarked, "Oh, he had a pericardial effusion." The medical staff had become so fixated on his erratic rhythm that they had forgotten the context of his case: if someone shows up with symptoms of a post op complication, don't start by trying to diagnose an unrelated malady. My coworker? His mother had a valve replacement and had a pericardial effusion.

That's a lot of words to say: checklists save lives.

[quickthrower2]

With doctors, you are your own doctor and the doctors you see are subcontractors. First appointment is a job interview. That’s the best way to think of it IMO. I guess I’m privileged to have the money to do this.

Google helps you know what it could be, but you need to do a fair bit of research and critical thinking.

Unfortunately if you are sick this is the last thing you want to do!

[ishiz]

Richard Feynman in What Do You Care What Other People Think? says something similar happened with his first wife Arlene who contracted tuberculosis. If we trust his account, then it went something like this:

Arlene presented with bumps on her neck and the doctors couldn't figure it out. In his free time Feynman read medical textbooks in the Princeton library, and the first thing in the book is tuberculosis, which it describes as being "very easy to diagnose." Feynman assumes if its so easy and the doctors can't figure it out then it has to be something much rarer, something like Hodgkin's lymphoma. He asks the doctor about Hodgkin's, and the doctor admits it is a possibility.

> When she went to the county hospital, the doctor wrote the following diagnosis: “Hodgkin’s disease?” So I realized that the doctor didn’t know any more than I did about this problem.

After several months the doctors order a biopsy of her neck and pretty easily confirm it was tuberculosis. Feynman concludes that he made a huge mistake assuming they ruled out the easiest diagnosis.

[throwaway205826]

Yep, if you really want someone to think hard about your condition, a hospital is the wrong place to go. And a lot of doctors will become defensive when they realize you’ve put more thought into it than they have.

[data_spy]

Not sure if true, but whenever I've had a foreign born doctor, they tended to be better in my experience.

[Arete314159]

It took me 15 years before I learned I had a b-12 deficiency. The test is simple and cheap, the treatment is simple and cheap, and the symptoms have been known for decades.

[tyingq]

Same for me. Slightly bulging neck. Itchy calves. Dry skin. Lethargy. Took years before anyone ran the relatively simple TSH test.

[lupinglade]

Same conclusion here as well.

[IG_Semmelweiss]

Veterinarians are no different.

Was abroad in a tropical climate to wait out COVID. Took our dog. 10 days before traveling back home, I see a engorged tick walking on the living room floor of our Airbnb. I was terrified because we have small children. But having grown up in a tropical country with a dog that would be full of ticks sometimes, I didn't think about our dog much.

On the 6 hour plane home, our dog is basically mute. He's very good traveling, but never that good.

We finally get home. He's not eating. He's sitting curled up by the door. I thought he missed the huge patio of our tropical house and the outdoors. Finally, when his favorite visitor came and he didn't even flinch, I knew something was really wrong.

Unfortunately, I had waited too long to take action: The day before the vet appt, my partner called me freaking out saying our puppy's eyes were rolling back and he was barely moving. I rushed him to a VEG clinic, where they ran all kinds of diagnosis.

I told the doctors where we had been, what I had seen, our dog's behaviour in the prior days etc. At this point i start requesting all the diagnostic results because a close person to me is a vet in said tropical country, and she could literally diagnose our dog.... over WHATSAPP. Her assessment was immediate and direct: My dog has babesia, and had gone into shock because the parasite had eaten all his white blood cells and platelets.

Doctors in the US were not quite on board yet. They first asked a million questions on what my dog had eaten. They were convinced that something was wrong with his stomach because he wasn't eating and also I believe there was tissue inflammation / sensitivity (which was also explained by other factors related to tick disease). They did run a tick panel and came back negative. They were not convinced by the babesia hypothesis. It detected no antibodies for it. (IIRC, My contact had told me that was common in situations where the virus had obliterated the immune system and the body had not had enough time to manufacture antibodies which could be detected by the test.)

Then starts the cachopony of errors. My dog breed is known to have heart murmurs. His murmur was present prior to the trip, and i had test results from the vet in the tropical country which showed the murmur had magically gone from a 1 to a 5 in about 1 week, so they started saying he had a heart problem. (nevermind that the heart behaves erratically when blood is poisoned by foreign invader).

Next day, they start saying it could be heart disease coupled with genetic issue. They want to do genetic tests. I say no.

At this point i have to discharge our dog because the clinic will close for the weekend. I take the dog to my vet. There they say its some kind of cancer (!!). They insist i do a biopsy...

By now my dog is stable but I still needed an Echo to be able to complete the diagnosis puzzle and avoid hospitalization at a major nearby hospital.. Took him to another VEG that was open, for diagnostics. This was covid, so i was sitting outside in the bitter cold with a sick dog. After a 5 hour wait they give me my results and sent me on my way, no directions on what to give our dog to keep him stable.

Next day, our dog deteriorated rapidly, and I was forced to do what I had been trying to avoid: get him admitted at the animal hospital. Signed off on a minimum admission of $2.5k. But hey, at least they didn't redo all tests (they wanted to).

Finally the resident infectious disease expert onsite requested a full tick panel (the IDEXX24 standard panel does not screen for babesia). Babesia is confirmed almost 5 days later.

Final bill $4500.

VEG did reimburse me almost $1000 because the managing director agreed it was borderline malpractice to discharge my dog from the 2nd location without a proper plan. I should be clear, although the doctors at the 1st VEG location were waaay off making up diagnoses as fast as they could think them, at least they did not hand me the dog and tell me... "good luck" , which is what the 2nd location did. And the experience with them from a financial standpoint was not adversarial. Both locations were forthcoming with costs. Very much unlike the hospital, which made me feel bad for.... trying to get any sort budget, before admission.

TL-DR: To a hammer, everything looks like a nail.

A clinic does well with broken bones, foreign objects in the belly, and the like. They don't do well with infectious diseases, even those that are quite common elsewhere, particularly for those that they never see at home.

[fellowniusmonk]

While I have no particular position, my brother is a molecular biologist and bioinformatics guy who has been published in nature, featured in NYT, etc. A true scientific nerds nerd, and he endlessly ridiculed the poor science and poor scientific understanding of people on the M.D. track that he interacted with in labs while he was doing research.

I do have this anecdote from deep personal experience though... pediatric cardiologists working at research hospitals are some of the kindest, most compassionate, honest and respectful people I have met. Everyone tends to treat children with condescension and patronization (and I feel safe to extrapolate that toward their views of people in general), but those doctors seem to know that as a child you've been weighed... or maybe they just comes from a place of true compassion and pity, people underestimate the importance of compassion, kindness and listening by doctors.. especially as issues become more complex.

I do think AI assistance is going to make a large difference in medical diagnostics work even if reality hasn't caught up with the hype yet.

[meheleventyone]

It’s a bit of a misunderstanding of the role of doctors as well IMO. Apart from a small fraction of them they aren’t scientists or researchers and aren’t supposed to be. And the human body is complex, problems can arise which can’t easily be understood. The expectation that every doctor is House and we’ll each get millions of dollar of diagnostics is wrong. There’s also a reason why experiments in science require an awful lot of preparation and rigor that doesn’t exist in the happenstance of the real world. No AI is going to solve for a lack of information or confounding factors that make understanding what’s happened impossible.

I had a heart attack nearly six weeks ago despite being healthy, fit and having no chronic health issues. They kept me in hospital for five days after I got a clot squished by a stent. I’ve come back negative for basically everything bar some immune disorder tests I’m waiting on the results of. The fact I’ve not heard probably means those were negative as well. So I got this fatal blood clot and the medical staff absolutely knocked it out of the park in terms of working out what the acute issue was, dealing with it without undue distress (seriously a PCI is magic) and my care and rehabilitation afterwards has been great. But I’ll likely never know why it happened.

The other side of that is I end up on a standard cocktail of medication despite having a normal blood pressure, normal cholesterol and so on. Essentially the drug regime seems calibrated for the average heart attack patient which is someone older with chronic problems. I had a rash as a side effect and the doctors swapped a med and I’m fine again. How did they know what to change of the six meds? I guess experience and wider statistical analysis in the medical community. It worked!

[blablabla123]

I remember former fellow students telling how they corrected medical students' practical physics internship assignments. Apparently the statistical rigour is much lower. On the other hand, I guess in pure natural sciences you work with much more indirection and have zero results nowadays unless you use a lot of tools. Probably there aren't that many medical conditions that can be treated in-depth based on first principles but I think concluding that whole medical science can be replaced by an AI assistant might be a bit far-fetched. Compassion is probably under-estimated indeed. Some people with serious conditions prefer to be treated at objectively less sophisticated yet less industrialized facilities.

[gwittel]

> poor science and poor scientific understanding of people on the M.D. track

Definitely a thing. At least historically, research is not a big part of a MD program in the US. MD/PhD programs are where its at -- Basically you do a few years of med school, then PhD, then finish MD. Its a very long haul. After which you usually go into Postdoc research or medical residency.

The best doctor I ever had was incredibly perceptive and compassionate. What did she teach in med school? How to work with patients (i.e. bedside manner). She moved on to head palliative care, another area where empathy is key.

Like any other profession doctors span a range of competency. There is an old joke: What do you call the person who finished last in medical school? Doctor.

[rmah]

First, I'm so sorry you're going through this illness and hope that you make a full recovery.

But I think that, to some degree, your feelings about the medical profession is a reflection of just how good medicine is these days. People go to the doctor expecting an accurate diagnosis and a treatment or cure. And, to be fair, 80% of the time, that's what they get. It's hard to overstate just how much of a radical shift in expectations this is.

Just a century ago, a compound fracture could be a death sentence. People randomly got sick a just dropped dead. Going to a doctor might, maybe, if you were lucky, fix what ailed you. Hell, just two centuries ago, doctors as we think of them today simply did not exist. Three centuries ago, people in Europe were routinely bled to balance the humors.

Biological systems are mind-numbingly complex. All the simple stuff has been figured out -- and if they are diseases mostly eradicated. Even so, I think that people's expectations of what doctors do is a bit... off. 99% of doctors are not scientists -- they are human body mechanics. And that means they mostly focus on common problems. Because, you know, they're common.

And neurological conditions are some of the most difficult to diagnose. Imaging techniques like MRI or CT often show no problems. Exploratory surgery is highly risky and also usually have no benefit. To extend the mechanic analogy, imagine going to your mechanic and saying "my car's GPS system is sluggish. sometimes. What's wrong?" and then expecting them to figure out what's wrong without being able to look "under the hood" of the computer system. All they can is use the GPS system and observe its behavior. That's essentially what neurologists have to do quite often. Tough job.

The good news is that there are doctors who engage in research. And they are, by trial and error, improving the state of the art of medicine. Does this knowledge get propagated to all other doctors rapidly enough? Probably not. But the knowledge dissemination is probably better today than ever before too. Obviously things can be improved. As pretty much anything can be improved. It just doesn't seem very helpful to spout "doctors are idiots" as some other posts seem to do.

[secnono]

>90% of medical “experts” are totally incompetent.

My wife had breast cancer, muliple lumps irregular shaped, the only answer was full mastectomy, except the oncologist wanted to do a biopsy before they did they surgery.

"Why?" I asked, "You already said that the safest option is to perform the mastectomy, right?"

The doctor replied, "Well, yes but we'd like to know what we are facing before we got in."

Me, "Will it change what you do?"

Doctor, "No"

Me, "Isn't bad to poke the tumor because can't that actually cause cells to migrate?"

Doctor, "yes"

Me, "So what's the benefit?"

Doctor, "We just want to know."

Me, "It seems like either you are padding the bill or you are just following some playbook because you actually don't know what you are doing."

Doctor, "We're done here."

After the surgery,

Doctor, "We discovered cancer cells in the lymph node, but that's probably just a side effect from the biop........" At that point he realized what he was saying and he also realized that I was ready to launch myself at him.

[catblast01]

This story has a major plot hole.

If you were so certain the biopsy was unnecessary and harmful, why didn’t you just refuse it, seek a second opinion (especially as you evidently are portraying the doctor as a villian).

Also your last paragraph doesn’t even read well as preteen fall fiction.

[monoideism]

> . Like any other industry, 90% of medical “experts” are totally incompetent.

100% correct. I’m dealing with some serious health issues the past year (multiple worsening chronic conditions, in and out of hospital, lost 30 lbs in 3 months, etc). And yeah, the vast majority of them are idiots who know nothing more than to pull out a (often dangerous) pharma that addresses a single symptom. And forget treatment - I was just hoping for a firm diagnosis. But they hem and haw, and don’t seem at all up to date with the latest research. You’re on your own.

[ashton314]

First, my sincere condolences. That is terrifying.

> Think about the people you know who learned Java in college and then never learned another programming language; chances are, your doctor is that kind of person.

Ooof. That is a really good analogy.

[cowanon22]

> Like any other industry, 90% of medical “experts” are totally incompetent.

I would guess it's even worse, maybe 1-5% of doctors truly understand the underlying physiology and will holistically look at all of the information. Most doctors I've met use population heuristics and published guidelines, and if you have something rare they just throw stuff at the wall instead of trying to understand it.

[b5n]

If you have any questions or attempt to have a discussion most doctors assume a 'where did you go to medical school' mentality, proceed to type your symptoms into an app, and then simply regurgitate the output.

[uslic001]

As a doctor I would agree. 5% of doctors are up to date and provide high quality care. 95% are not up to date and provide low quality care. Most older doctors are grandfathered in to their specialty and do not have to take their boards but once in their life when they get out of training. So some have not taken their boards in over 30 years. Doctors in the generation after the baby boomers are not grandfathered in and have to take their boards at least every 10 years if not more often now in some specialties. So If I were you look for a doctor who graduated in 1991 or later as that is the year they stopped grandfathering. I graduated medical school in 1991. I have taken my specialty boards three times already (1997/2008/2018). Now they are moving to yearly mini-updates to stay up to date as things change too much in 10 years. None of the older doctors have to do any of this additional education and testing. They are still programming in FORTRAN.

[skadamou]

I'm so sorry this happened to you and I'm glad you are starting to feel at least somewhat back to your old self. I definitely understand where this opinion of docs is coming from as there are definitely some incompetent docs out there but don't you think that your opinion is largely based around an anecdotal experience that is probably pretty abnormal? Medicine as a field is still pretty unscientific in a lot of ways. To me it feels like docs are like alchemists before the discovery of the atom/modern chemistry. They're doing the best they can with the tools at hand but their field has some fundamental gaps in knowledge. Is that really the doctors fault?

That's just my two cents. Obviously this doesn't do much to help folks dealing with poorly understood illnesses but I hope it helps balance out the "all doctors are idiots" opinion that sometimes comes up in threads like this.

[lrem]

Idiots is the wrong word. They've achieved a state of the art knowledge. An idiot wouldn't get there. The problem is, most of them stopped at that. And state of the art moved on.

[yoyonamite]

I think a core problem is that the incentives are to give a quick diagnosis and prescription, and if that diagnosis is wrong, move on to the next diagnosis / prescription, repeat. This is in contrast to my experience with a functional doctor, who laid out a logical plan, testing to verify hypotheses, and only after all the pieces fit together, decided on a treatment strategy.

Of course, for the majority of cases, the mainstream approach works well or well enough, but it's definitely frustrating when you fall outside of it. I think some people don't even know they're falling outside of it (e.g. long-term gastrointestinal problems), as in they've given up figuring out the root cause and have learnt to deal with their symptoms. I think the number is non-trivial (1%+?), but I can't think of any way to prove that.

[throwaway205826]

> Is that really the doctors fault?

It seemed that most of the doctors I had to deal with were incompetent either because they were lazy or stupid. Realistically maybe they were just overworked, but the effect was the same. I’m not really interested in assigning “fault” here - that’s just a factual observation I made.

[austinvsmiami]

I had something very similar. 2 years went by where I visited over 30 doctors, and none of the public healthcare (UK) primary care and specialists had any idea what the hell was going. I took matters in my own hands, was doing blood tests by own research, googled everything I can find. Turns out I had hypogonadism, and had evidence of blood tests to prove it, and even then it took 3 more doctors to prescribe me TRT. Hope software replaces docs faster than lightning

[georgeecollins]

>> 1. Like any other industry, 90% of medical “experts” are totally incompetent.

I would need data to accept this, not anecdote. There is a tendency for smart people to think they know better than experts.

[throwaway205826]

> There is a tendency for smart people to think they know better than experts.

They probably do. People hate to recognize this because it goes against most western notions of the value of work ethic, but a couple stddev of intelligence is, in many cases, more valuable than many years of experience. Sad but true.

[LatteLazy]

It's not that they don't know, it's that they pretend they do, they don't want to discuss uncertainty and they dismiss when you bring it up. I'm on my 5th treatment that they're "very confident will really help a lot" but can't quite quote a percentage change of recovery for.

At least that's been my experience with very similar issues.

Sorry for your condition. You're not the only one in the boat. So at least we have company. I hope that helps.

[m463]

To be honest, there are some computer problems that you really only get an inkling of when you've seen "weirdness" like that before.

I remember one debugging session that I traced all over the universe, only to find it was a (kernel) stack overflow. The debugging exacerbated the problem because the debug routines ended up using more stack to log the error.

The problem was strange in that it moved around and things broke that were not a problem.

for reference, most operating systems have stack sizes of many megabytes for userland programs, yet kernel stack sizes are usually just kilobytes.

I expect there are analogies like that with the human body, and with many more systems and with a time-critical life-and-death backdrop, I'm glad I'm not a doctor.

[thrwawy06182021]

I also am suffering from something similar. I have the working theory it's from extreme burnout but do not know for sure. I would tremendously appreciate if you shared what you found to help?

[throwaway205826]

It’s hard to say what actually helped, but I tried a bunch of behavioral changes. Two I’ve stuck with are significantly increased exercise (half an hour plus of intense exercise every day) and a strict ketogenic diet. Even if they didn’t do anything at all for my primary condition, they’ve resulted in totally orthogonal improvements to my life. A couple months of rest (didn’t have much choice there - I couldn’t do anything else). I also used nicotine gum as a behavioral reinforcement drug to help “rehabilitate” myself on the way back to health, and THC to help me sleep.

FWIW, I think it’s unlikely my problem was burnout - I had a number of viral-characteristic physiological symptoms such as digestive problems, coughing, and heart palpitations, and I would be surprised if they had a purely neurochemical cause - but in either case hopefully some of these behaviors could help.

[qwerty456127]

The symptoms sound like ADHD. Are you sure that's not the case? Have you tried sleeping more or the opposite - sleep deprivation (which can often relief ADHD) or nicotine? I have had this for my entire life and I also know a girl who got this spontaneously. Perhaps some Adderall (or a good vacation) could help.

[temikus]

I’m sorry to hear this has happened to you and I do hope you’re only going to get better.

State of diagnostics is indeed very poor, esp. in a field like Immunology. It took 2 years and 4 doctors to find what was wrong with me and how to treat it. I had to scour medical journals for treatment suggestions and then press on my doctors to try it. Sigh.

[StavrosK]

Did you also hear a sound like a bass guitar string snapping when this happened?

[throwaway205826]

No, but this is a very interesting question. Why do you ask?

[fellellor]

Yeah. Your recovery is still not complete it seems. All the best. Eat healthy, stay occupied, and think happy thoughts.

[hellbannedguy]

They do like mentioning The Art Of Medicine when it's not a simple ailment, or treatment failure. And I get it.

It might be the only profession I know of that can still bill though. They make sure they are paid.

I do get the difficulty of the profession. I know most treatments are Placebo cures. It's a weird profession. Or, we still know very little, especially ailments that affect the brain.

[garenp]

Was there anything you did that helped you get better?

[throwaway205826]

Hard to say what actually helped, but two high-impact low-cost behavioral changes I made (and stuck with) were a strict ketogenic diet and regular heavy exercise (mixture of cardio and weight training). Ketogenic diet has a lot going for it - besides being a nice elimination diet (in case your problem is some kind of dietary autoimmune condition or food allergy or something), it also treats a lot of possible metabolic conditions. Exercise as well. I’m sure resting (mentally) helped but I didn’t have much choice there - resting was the only activity I could really do, and even that I couldn’t do very well.

[dave_sid]

Hey that’s me you’re talking about! Actually I dabbled a little in Swift to maybe I’m okay.

[dave_sid]

Wow. Marked down for a self depreciating joke. Good old HN, a jovial vortex.

[codingwageslave]

I’ve been trying to tell people this. It’s always met with ridicule

[ROARosen]

... Or maybe the commenter is not interested in announcing their medical history under their "real" (nik)name.

[throw9239393]

I also made a throwaway account to make a comment here. I also said the article was well written. I am an HN regular, but didn't want my medical problem tied to my HN account name.

Is it that odd that we might have polar opposite views on the article? Or that having a somewhat similar experience to the author, that I might view the article differently than you do?

[JoBrad]

This was sarcasm, right? I’m not one of the old-timers by any stretch, but I’ve seen plenty of code that compensates for workarounds introduced by poor planning or hastily-cobbled code.

[DoreenMichele]

That's at least partly about how medicine gets monetized.

Imagine a world in which you got paid for patches instead of being paid by the hour. Patches on patches would likely proliferate.

[StavrosK]

You have no idea how much technical debt there is in the average body. There's much more technical debt in the body than there is technology in the world.

The two systems aren't remotely comparable in complexity.

[mewpmewp2]

What's wrong with prescribing a drug for a side effect of another drug?

If you get cancer, the treatment you get can cause very many side effects which in turn can potentially be alleviated by other type of medicine. What would your suggestion be? Not to treat the patient at all?

[kevinmgranger]

> Imagine coding a software patch to fix a bug introduced by another patch.

This happens all the time.

[deertick1]

"Imagine coding a software patch to fix a bug introduced by another patch"

As a support engineer.... Is this not common? Cause dear lord does my (large corporate entity that shall not be named) do this ALL THE TIME.

Most recent was a set of about 5 consecutive patches for shitty patches.

Send help.

[the_af]

> Imagine coding a software patch to fix a bug introduced by another patch.

But this is very common! Far from mocking my fellow developers, I'll be the first to admit I've been guilty of this many times.

[15rthughes]

I honestly don’t care if this isn’t “professional” enough for hackernews or not.

You have the self inflated ego of a psychopath if you think this is true. This comment is the living embodiment of the Dunning-Kruger effect.