11 ms·

This could just as easily be about the perils of knowing how to look up symptoms on the web. If you're reading Hacker News you're probably used to reading fast

This could just as easily be about the perils of knowing how to look up symptoms on the web. If you're reading Hacker News you're probably used to reading fast, integrating new knowledge into a mental model and applying it all to solve the problem at hand. You often have to be an "instant expert" in everything. So the temptation is to be an instant expert in your own (self-diagnosed) condition. Here's my advice after spending way too much time with doctors over the last year (since my wife was diagnosed with cancer). 1. Knowledge: A doctor will have far more general medical knowledge and experience than you. Your GP or specialist should be the bedrock of any diagnosis or treatment. However, it is absolutely possible to read the literature and get a more current or targeted understanding of some of the nuances of your particular disease. Don't be afraid to discuss them with your doctor, even seek second and third opinions, but don't just rely on your own judgement instead of theirs. 2. Motivation: Doctors are conservative: they need to avoid liability and maintain good relationships with their peers. As a patient you will have a different risk/benefit calculation. In some cases you will need to push your doctor to perform that specialised test instead of just offering reassurance, or to try that experimental treatment instead of the "reasonable futility" of standard care. 3. Symptoms: You know best your own symptoms, but you may not have the objectivity or experience to understand them and compare them to other people. You should document them as much as possible, maybe even graph them or make charts, to make this information accessible to your doctor. I've found that a simple timeline containing symptoms, measurements and interventions can be incredibly useful in tracking a condition.

James001 10y ago
I'm from Canada, and all I can say is I wish the doctors up here actually listened to your opinion on your own medical condition. While it is important to consult and listen to doctors, I do think people trust their doctors too much. People should always field second opinions, especially before major interventions. Also, people shouldn't discount their own understandings of their condition. But seriously, up in Canada I feel like we have a 3rd world medical system for dealing with chronic health conditions. For acute medical conditions, we're amongst the best in the world. But if it's chronic? Or if we cannot diagnose it? Good f'n luck, my friend.
- deleted 10y ago
  [deleted]
- idra 10y ago
  Problems with dealing with chronic health conditions seems to be more of a trait of modern Western medicine, which in a lot of cases is about treating symptoms only. In a first world country with free medical care it is very hard to actually die, but you may quietly suffer all your life and won't be treated because it is not perceived as being critical, and critical patients have priority. If only there was a more holistic approach to treatment actually backed by science. For example, Chinese traditional herbal medicine is supposed to treat the underlying cause of problems, but unfortunately it is based entirely on myth and superstition. The thing is, it actually works sometimes, and helps people who have been told to "learn to live with it" by Western doctors.
  - blacksmith_tb 10y ago
    My general impression of why people like (and are willing to pay out of pocket, often without any kind coverage) for alternative medicine is that they feel like they are being listened to - ironically they are paying by the hour for that, too, but the rates are better. Traditional Chinese Medicine is an interesting mix, I wouldn't say it's "based entirely on myth and superstition" though it has plenty of that (hence the ghastly use of bear bile, tiger bone, etc. [1], though at least there are some attempts at reform), it also is partly the result of hundreds of years of trial and error experimentation with a wide range of plants on a very large number of people (proto-scientific, at the very least). It seems likely that some of its efficacy comes from placebo effect (but many pharmaceuticals aren't much better). 1: https://www.sciencebasedmedicine.org/asian-bear-bile-remedies-barbarism-or-medicine/ https://www.sciencebasedmedicine.org/asian-bear-bile-remedie...
- stuxnet79 10y ago
  Canada's gatekeeper model can be infuriating. I have various issues that I'd like to address but I've become so fed up with the long waiting times, and often lazy doctors that I keep deferring visits. It's reached a point where I don't trust or respect doctors at all. But I wonder if the different provinces have a different system - I'm complaining about OHIP specifically.
Shinkei 10y ago
Wow. I am a physician and this is perfect. 1. You just need to read about the Dunning-Kruger effect. Enough said. https://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect https://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect 2. Each physician has their own motivations for this one... some liability, some internal moral code, but some just understand that science is about being objective. That being said, prevailing wisdom is that medicine is as much an art as it is a science. 3. Yes, but be careful. Try to establish a relationship with your provider before pulling out the graphs and spreadsheets.
- aangjie 10y ago
  After a recent argument with my wife's doctor, I decided to write a rationality style guide for new doctors. Feedback from practicing Doctors is hard to find. Please comment. Here's the link http://lesswrong.com/lw/ntq/advice_to_new_doctors_starting_practice/ http://lesswrong.com/lw/ntq/advice_to_new_doctors_starting_p... .
  - Shinkei 10y ago
    It looks great! I will read it over the next few days.
- arpa 10y ago
  If you read about the Dunning-Kruger effect, it is essential to also read its' criticism, very aptly summarized here: http://www.talyarkoni.org/blog/2010/07/07/what-the-dunning-kruger-effect-is-and-isnt/ http://www.talyarkoni.org/blog/2010/07/07/what-the-dunning-k... (posted here numerous times; the truth is, well, we all suck at heuristic self-assessment, regardless of our skill, sorry). It's always easy to write off other people as "incompetent", blame Dunning-Kruger, and just ignore what they say and think they know. A lot of physicians tend to do that, and, frankly speaking, it just comes off as arrogance and does not help confidence at all.
- icantdrive55 10y ago
  Let's not forget good insurance, and large amounts of money. I hate to be that guy, but I have been to too many unneeded office visits over my years, or have been told flat out Dr. Whatever charges $350/hr. Hour? It's always just a short visit. As, I've gotten older, I don't want to spend to much time with them. The shorter the office visit the better. Yea, and I know, your physician lives are so terrible. You had to pay $400,000 for school. You had to get through that residency in which you where hazed, by other Doctors. You have to listen to people whine, and complain--in many cases because they are sick, and in pain. (Get ready for the "I don't treat pain" Doctor", and the FDA is on their side. I don't feel like debating this one either. Too tired.) Yea, you guessed right, I'm no fan of the American Doctor. I don't like the system? Or, I just don't like American Doctors, with that ego. An ego that seems undeserved after getting into med school, in so, so many cases. On another note, I'm shocked at how seemingly little advances medicine has made in the last 30 years. Advances that help the patients. Not theoretical advances that look nice on paper. I smile, and kiss their ass, but there's no love, nor even much respect anymore. Signed, Alotofpatients (I'm not comming back to this post. I will add this, I used to think older doctors were better. I think I was really wrong. In my life, I have met one doctor who appeared to get better with age. He had some unusual medical issues throughout his life that appeared to make him care?)
stordoff 10y ago
This sounds reminiscent of my own experiences (three plus years dealing with an as yet undiagnosed condition(s)). Regarding your first point, the most useful thing for me was finding a doctor I work well with - being able to suggest a potential cause/treatment without it coming across as "I'm the patient; I/The Internet know best" has been extremely useful. Most of the time I've overlooked something (I'll never have the same knowledge/experience base as my GP), but the few cases where it was relevant and hadn't occurred to my GP have lead to better treatments.
Noseshine 10y ago
It's also important to find the right doctor, and this can be very hard. I had always been extremely trusting and never cared about anything - when it came to health, go to the doctor, do what they tell you to the letter, no need to think about anything I have no clue about. Until the doctor - a professor even - gave me advice in a strange crisis that made no sense. He wasn't wrong, he gave exactly the advice that is current "state of the art" for the condition he diagnosed. The problem was, where did that condition come from? The doc didn't care, his job was done. He had a diagnosis and he gave the recommended treatment suggestion (which consists of working on the symptoms, and very badly so, because they don't understand that condition even though it's quite common). Following his treatment I got a huge candida outbreak (and I don't have chemo or AIDS) the symptoms of which he completely ignored. I later got nystatin and then even got diflucan prescribed for three weeks (it wasn't a systemic infection and yet that stuff helped greatly), both those drugs with huge positive effect, but candida isn't a cause but itself a symptom. I dug deeper and found the root cause. Then I went and found doctors who actually knew something about it. I got treated at a university clinic by a researcher doc with chelators against chronic mercury poisoning. 5 years later: miracles happened. The last one of many was that the endocrinologist put me back on the table to repeat his ultrasound of my right thyroid, which for over twenty years had been double-size and with a 4mm cold nodule - because the nodule was gone, and the thyroid was almost back to normal size. "I'm amazed" was all he could say several times. During chelation I had had "tissue pain" (can't describe it) for a few weeks right around the right thyroid. There is a lot more, like the psoriasis and the tinnitus and many of other long-term problems that just disappeared. So I'm glad that I ignored the doctor(s), very, very few would find a chronic heavy metal poisoning. Ignoring a doctors opinion and going out on my own was the hardest thing I ever did in my life. Internet forums, while indeed and truly often horrible, did help me find the problem. You have to filter out over 90%, but one doesn't even have to be an expert to detect the BS. The rest can be valuable when your doctor doesn't find anything. It's not like doctors couldn't find it - it's just that they don't have the time. The waiting room is full, how much time is it worth spending on the problems of any given patient? Especially "functional" problems where you can't actually see anything even with biomedical imaging. - Completely unrelated to both the previous story and inside that story to the problem I had, I started learning about medical topics, actually out of boredom initially and then got drawn into it. Hundreds of lecture hours and courses later I now understand the basics of anatomy, physiology, had to learn lots of chemistry, org. chem., biochemistry, lots of statistics (never played any significant role in my CS study or in my life), and neuroscience, over 70 courses in total half of which were medical topics. It feels GOOD to know those things, I recommend it to anyone who has some time left for learning. Neuroscience especially should be a must for CS/IT folks, try https://www.mcb80x.org/ https://www.mcb80x.org/ for a start and Medical Neuroscience (https://www.coursera.org/learn/medical-neuroscience https://www.coursera.org/learn/medical-neuroscience) as a follow-up, one of the best courses out there mostly because the professor teaching it is wonderful. Don't just learn functional programming with Haskell or Scala, learn brain! :)
tim333 10y ago
2. Motivation surprised me in real life. I had a friend with cancer and was surprised the doctors went for the "reasonable futility" of standard care which had about a 0% 5 year survival rate when there were less conventional treatments with maybe 15% survival.

James001 10y ago

I'm from Canada, and all I can say is I wish the doctors up here actually listened to your opinion on your own medical condition. While it is important to consult and listen to doctors, I do think people trust their doctors too much. People should always field second opinions, especially before major interventions. Also, people shouldn't discount their own understandings of their condition. But seriously, up in Canada I feel like we have a 3rd world medical system for dealing with chronic health conditions. For acute medical conditions, we're amongst the best in the world. But if it's chronic? Or if we cannot diagnose it? Good f'n luck, my friend.

deleted 10y ago
[deleted]
idra 10y ago
Problems with dealing with chronic health conditions seems to be more of a trait of modern Western medicine, which in a lot of cases is about treating symptoms only. In a first world country with free medical care it is very hard to actually die, but you may quietly suffer all your life and won't be treated because it is not perceived as being critical, and critical patients have priority. If only there was a more holistic approach to treatment actually backed by science. For example, Chinese traditional herbal medicine is supposed to treat the underlying cause of problems, but unfortunately it is based entirely on myth and superstition. The thing is, it actually works sometimes, and helps people who have been told to "learn to live with it" by Western doctors.
- blacksmith_tb 10y ago
  My general impression of why people like (and are willing to pay out of pocket, often without any kind coverage) for alternative medicine is that they feel like they are being listened to - ironically they are paying by the hour for that, too, but the rates are better. Traditional Chinese Medicine is an interesting mix, I wouldn't say it's "based entirely on myth and superstition" though it has plenty of that (hence the ghastly use of bear bile, tiger bone, etc. [1], though at least there are some attempts at reform), it also is partly the result of hundreds of years of trial and error experimentation with a wide range of plants on a very large number of people (proto-scientific, at the very least). It seems likely that some of its efficacy comes from placebo effect (but many pharmaceuticals aren't much better). 1: https://www.sciencebasedmedicine.org/asian-bear-bile-remedies-barbarism-or-medicine/ https://www.sciencebasedmedicine.org/asian-bear-bile-remedie...
stuxnet79 10y ago
Canada's gatekeeper model can be infuriating. I have various issues that I'd like to address but I've become so fed up with the long waiting times, and often lazy doctors that I keep deferring visits. It's reached a point where I don't trust or respect doctors at all. But I wonder if the different provinces have a different system - I'm complaining about OHIP specifically.

Shinkei 10y ago

Wow. I am a physician and this is perfect. 1. You just need to read about the Dunning-Kruger effect. Enough said. https://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect https://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect 2. Each physician has their own motivations for this one... some liability, some internal moral code, but some just understand that science is about being objective. That being said, prevailing wisdom is that medicine is as much an art as it is a science. 3. Yes, but be careful. Try to establish a relationship with your provider before pulling out the graphs and spreadsheets.

aangjie 10y ago
After a recent argument with my wife's doctor, I decided to write a rationality style guide for new doctors. Feedback from practicing Doctors is hard to find. Please comment. Here's the link http://lesswrong.com/lw/ntq/advice_to_new_doctors_starting_practice/ http://lesswrong.com/lw/ntq/advice_to_new_doctors_starting_p... .
- Shinkei 10y ago
  It looks great! I will read it over the next few days.
arpa 10y ago
If you read about the Dunning-Kruger effect, it is essential to also read its' criticism, very aptly summarized here: http://www.talyarkoni.org/blog/2010/07/07/what-the-dunning-kruger-effect-is-and-isnt/ http://www.talyarkoni.org/blog/2010/07/07/what-the-dunning-k... (posted here numerous times; the truth is, well, we all suck at heuristic self-assessment, regardless of our skill, sorry). It's always easy to write off other people as "incompetent", blame Dunning-Kruger, and just ignore what they say and think they know. A lot of physicians tend to do that, and, frankly speaking, it just comes off as arrogance and does not help confidence at all.
icantdrive55 10y ago
Let's not forget good insurance, and large amounts of money. I hate to be that guy, but I have been to too many unneeded office visits over my years, or have been told flat out Dr. Whatever charges $350/hr. Hour? It's always just a short visit. As, I've gotten older, I don't want to spend to much time with them. The shorter the office visit the better. Yea, and I know, your physician lives are so terrible. You had to pay $400,000 for school. You had to get through that residency in which you where hazed, by other Doctors. You have to listen to people whine, and complain--in many cases because they are sick, and in pain. (Get ready for the "I don't treat pain" Doctor", and the FDA is on their side. I don't feel like debating this one either. Too tired.) Yea, you guessed right, I'm no fan of the American Doctor. I don't like the system? Or, I just don't like American Doctors, with that ego. An ego that seems undeserved after getting into med school, in so, so many cases. On another note, I'm shocked at how seemingly little advances medicine has made in the last 30 years. Advances that help the patients. Not theoretical advances that look nice on paper. I smile, and kiss their ass, but there's no love, nor even much respect anymore. Signed, Alotofpatients (I'm not comming back to this post. I will add this, I used to think older doctors were better. I think I was really wrong. In my life, I have met one doctor who appeared to get better with age. He had some unusual medical issues throughout his life that appeared to make him care?)

stordoff 10y ago

This sounds reminiscent of my own experiences (three plus years dealing with an as yet undiagnosed condition(s)). Regarding your first point, the most useful thing for me was finding a doctor I work well with - being able to suggest a potential cause/treatment without it coming across as "I'm the patient; I/The Internet know best" has been extremely useful. Most of the time I've overlooked something (I'll never have the same knowledge/experience base as my GP), but the few cases where it was relevant and hadn't occurred to my GP have lead to better treatments.

Noseshine 10y ago

It's also important to find the right doctor, and this can be very hard. I had always been extremely trusting and never cared about anything - when it came to health, go to the doctor, do what they tell you to the letter, no need to think about anything I have no clue about. Until the doctor - a professor even - gave me advice in a strange crisis that made no sense. He wasn't wrong, he gave exactly the advice that is current "state of the art" for the condition he diagnosed. The problem was, where did that condition come from? The doc didn't care, his job was done. He had a diagnosis and he gave the recommended treatment suggestion (which consists of working on the symptoms, and very badly so, because they don't understand that condition even though it's quite common). Following his treatment I got a huge candida outbreak (and I don't have chemo or AIDS) the symptoms of which he completely ignored. I later got nystatin and then even got diflucan prescribed for three weeks (it wasn't a systemic infection and yet that stuff helped greatly), both those drugs with huge positive effect, but candida isn't a cause but itself a symptom. I dug deeper and found the root cause. Then I went and found doctors who actually knew something about it. I got treated at a university clinic by a researcher doc with chelators against chronic mercury poisoning. 5 years later: miracles happened. The last one of many was that the endocrinologist put me back on the table to repeat his ultrasound of my right thyroid, which for over twenty years had been double-size and with a 4mm cold nodule - because the nodule was gone, and the thyroid was almost back to normal size. "I'm amazed" was all he could say several times. During chelation I had had "tissue pain" (can't describe it) for a few weeks right around the right thyroid. There is a lot more, like the psoriasis and the tinnitus and many of other long-term problems that just disappeared. So I'm glad that I ignored the doctor(s), very, very few would find a chronic heavy metal poisoning. Ignoring a doctors opinion and going out on my own was the hardest thing I ever did in my life. Internet forums, while indeed and truly often horrible, did help me find the problem. You have to filter out over 90%, but one doesn't even have to be an expert to detect the BS. The rest can be valuable when your doctor doesn't find anything. It's not like doctors couldn't find it - it's just that they don't have the time. The waiting room is full, how much time is it worth spending on the problems of any given patient? Especially "functional" problems where you can't actually see anything even with biomedical imaging. - Completely unrelated to both the previous story and inside that story to the problem I had, I started learning about medical topics, actually out of boredom initially and then got drawn into it. Hundreds of lecture hours and courses later I now understand the basics of anatomy, physiology, had to learn lots of chemistry, org. chem., biochemistry, lots of statistics (never played any significant role in my CS study or in my life), and neuroscience, over 70 courses in total half of which were medical topics. It feels GOOD to know those things, I recommend it to anyone who has some time left for learning. Neuroscience especially should be a must for CS/IT folks, try https://www.mcb80x.org/ https://www.mcb80x.org/ for a start and Medical Neuroscience (https://www.coursera.org/learn/medical-neuroscience https://www.coursera.org/learn/medical-neuroscience) as a follow-up, one of the best courses out there mostly because the professor teaching it is wonderful. Don't just learn functional programming with Haskell or Scala, learn brain! :)

tim333 10y ago

2. Motivation surprised me in real life. I had a friend with cancer and was surprised the doctors went for the "reasonable futility" of standard care which had about a 0% 5 year survival rate when there were less conventional treatments with maybe 15% survival.