A boy, his brain, and a decades-long medical controversy • Hacker News Board

Re: A boy, his brain, and a decades-long medical controversy

#61

Post by inglor_cz » Wed, Jun 16, 2021, 7:38 AM UTC

deltaonetwo wrote: post #45

You don't know the extent of human bias. All humans are ruled more by bias than by logic, doctors included AND you included as well. What's especially worse is that Doctors are trained to mistrust a patient. They view patients as lower ranking simpletons so they trust established knowledge more than they trust a patients description of an anomaly. The key here that you have to realize is that what the doctors are doi…

I am not offended, but I am not convinced that your logic holds. Humans are not solitary animals. We live in groups and are subject to evolutionary pressures that favor traits advantageous to survival of groups.

Perhaps having a certain percentage of gay or asexual people helps the entire group survive better. Maybe it is an archaic form of division of labor? Some individuals will specialize on breeding, others on guard duties, hunting etc.

Re: A boy, his brain, and a decades-long medical controversy

#62

Post by checkyoursudo » Wed, Jun 16, 2021, 7:39 AM UTC

bigcorp-slave wrote: post #2

This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.

It seems like there is a bit of an overestimation of what medicine can do. I don't know if that overestimation is by physicians, patients, society-at-large, everyone?

It feels like we are barely out of the dark ages when it comes to medicine.

My brother died at a fairly young age (30s) because nobody could figure out what was wrong with him over the course of a couple of years. Specialists investigated a lot of diagnoses. I don't know if it was rare or they just missed things or what. We'll never know if they could have done more or not. I heard many variations of "why can't these useless people figure this out?" And I have wondered if the answer is that, for all the advances and modern technology, we're just not that good at medicine yet, not really.

Re: A boy, his brain, and a decades-long medical controversy

#63

Post by crooked-v » Wed, Jun 16, 2021, 7:42 AM UTC

deltaonetwo wrote: post #45

You don't know the extent of human bias. All humans are ruled more by bias than by logic, doctors included AND you included as well. What's especially worse is that Doctors are trained to mistrust a patient. They view patients as lower ranking simpletons so they trust established knowledge more than they trust a patients description of an anomaly. The key here that you have to realize is that what the doctors are doi…

> The point is to see that there is certain logic behind my statement that is worth discussion

Not really, no, given that it's based on a premise ("traits that harm a specific individual's chances of reproduction can't be selected for by evolution") that's obviously false as soon as you take half a second to look at eusocial animals.

Re: A boy, his brain, and a decades-long medical controversy

#64

Post by mewpmewp2 » Wed, Jun 16, 2021, 8:03 AM UTC

checkyoursudo wrote: post #62

bigcorp-slave wrote: post #2

This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.

It seems like there is a bit of an overestimation of what medicine can do. I don't know if that overestimation is by physicians, patients, society-at-large, everyone? It feels like we are barely out of the dark ages when it comes to medicine. My brother died at a fairly young age (30s) because nobody could figure out what was wrong with him over the course of a couple of years. Specialists investigated a lot of diagn…

I think we are leagues out of dark ages, but it doesn't mean we are perfect or anywhere near perfect, or that it would even be possible to be perfect in the field of medicine.

People like to think that some X has the perfect answer to any problem we might face, but in fact we don't have answers to very many problems.

The ability to solve various problems is not binary.

Re: A boy, his brain, and a decades-long medical controversy

#65

Post by trainsplanes » Wed, Jun 16, 2021, 8:09 AM UTC

marcan_42 wrote: post #12

sterlind wrote: post #10

Earlier quoted context omitted.

hEDS, the disorder I have, is somewhat controversial like PANS is. the symptoms include hypermobility (overly flexible), spontaneous joint dislocations, widespread pain, joint degeneration, easily damaged skin, fatigue, immune dysfunction and tachycardia. ~2% of the population is hypermobile, but healthy, and don't have those symptoms. hEDS is known to be heritable, but the genes haven't yet been identified. many doc…

I don't understand why so many doctors seem incapable of doing research or accept research provided to them by their patients. If you have symptoms that match a condition documented in medical literature, and the doctor can't come up with a better fitting explanation, why would they reject it? It's like these people learned a subset of their field and then just refuse to ever learn anything new.

I've done this and had a doctor that was kind enough to consider it. I had some mysterious symptoms and managed to find some things that I thought might fit it, and it helped him get a better idea of what I was dealing with.

He also went through and dismissed most of the more worrying possibilities, which set my mind at ease, and narrowed it down to a more likely condition.

So basically, I threw in a bunch of options and most of them were wrong. Thankfully I didn't walk in convinced that any one of them was absolutely the cause, but I imagine some patients do, and it can be a pain for the doctor.

Re: A boy, his brain, and a decades-long medical controversy

#66

Post by Mordisquitos » Wed, Jun 16, 2021, 8:17 AM UTC

wyldfire wrote: post #20

maybelsyrup wrote: post #16

> Rita thought back to the winter. She couldn’t remember Timothy coming down with a sore throat, but just before the ski trip she had noticed that the skin around his anus looked a little red. U wot m8 This is a ten year old. My parents were not inspecting that particular feature of my anatomy at that age. What's going on here

"mom, my bum itches." So mom decides to look for the source. Seems appropriate/natural.

In that case it would be appreciated if the article said it like this:

>...just before the ski trip she had noticed that the skin around his anus looked a little red when he asked her to check it out because it was itchy.

Otherwise, it seems to imply that mum would see her healthy son's anus as a matter of course. Noticing the skin around his eyes is red? Expected! Noticing the skin around his nipples is red? Perfectly normal, I can imagine many situations where she could see them. Even noticing the skin in his crotch area is red? Maybe a bit odd, but perfectly believable if they're particularly liberal about nudity in the home... but the anus?‽

Re: A boy, his brain, and a decades-long medical controversy

#67

Post by loufe » Wed, Jun 16, 2021, 8:20 AM UTC

This story hits home a bit for me. I had a severe case of mononucleosis at 18. After a month of being bedridden I developed a tic (muscle spasms and sometimes a tssk sound made with my mouth). I saw a lead tic specialist in my area and they said "odd, but will probably go away in a couple months". It's been almost 10 years. They happen sometimes weeks between but normally one or two a day. It has obvious trends with stress and drinking and strong emotions. I'm pretty at peace with it but I still find some of the looks and ignorant questions a bit tiring. My family and I did research way back then when the neurologist's diagnosis was so vague, and our best guess was PANDAS. It just seem to fit. The tics are just a part of me now, and while I swear I lost some IQ from the experience as well I am happy and healthy and living my life.

Re: A boy, his brain, and a decades-long medical controversy

#68

Post by industriousthou » Wed, Jun 16, 2021, 8:22 AM UTC

deltaonetwo wrote: post #45

You don't know the extent of human bias. All humans are ruled more by bias than by logic, doctors included AND you included as well. What's especially worse is that Doctors are trained to mistrust a patient. They view patients as lower ranking simpletons so they trust established knowledge more than they trust a patients description of an anomaly. The key here that you have to realize is that what the doctors are doi…

This kind of misinformed thinking is why doctors often don’t take their patients seriously.

Re: A boy, his brain, and a decades-long medical controversy

#69

Post by ackbar03 » Wed, Jun 16, 2021, 8:31 AM UTC

bigcorp-slave wrote: post #2

This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.

I think this is sort of due to necessity. A country's health system, like all organizations, is resource constrained and must provide the maximum benefit it can to society with what it has, especially for public health systems

Re: A boy, his brain, and a decades-long medical controversy

#70

Post by nootropicat » Wed, Jun 16, 2021, 8:35 AM UTC

renewiltord wrote: post #17

unanswered wrote: post #15

Earlier quoted context omitted.

You actually get tests? Consider yourself lucky. For me it's just "I don't recognize those symptoms. Symptom A and symptom B are never known to go together so I'll just ignore B, and there are no tests for conditions which cause A, so fuck off lol".

As usual this is the result of gatekeeping in the medical industry. It is typical of this industry to kill a million people through inaction to avoid killing one through action. As a bonus, by arrogating the exclusive right to drug prescription and analysis to themselves they can charge what they want. Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if on…

Fortunately almost all drugs can be ordered online without prescription, at least those that are also in India. For larger amounts of money you could even order a custom synthesis in a Chinese lab.