4 ms·

The rate of misdiagnosis in the medical field is genuinely frightening. Its not uncommon for chronically ill people to need 20 to hundreds of appointments to ge

The rate of misdiagnosis in the medical field is genuinely frightening. Its not uncommon for chronically ill people to need 20 to hundreds of appointments to get a diagnosis for the disease they clearly have. Worse I think is all the "hysteria" and "hypochondria" misdiagnoses along the way that extend how long it takes to get the diagnosis and causes denial of treatment by other clinicians. This stuff has a very long history and I can't tell they exist or not what I can say is that doctors miss the real condition all the time. For chronic illness the actual appointment to diagnosis rate is less than 5%, that is an enormous waste of everyones time and money and its made worse by the fact it comes along with a bad diagnosis that dismisses the patient. This is a much bigger problem than investigating someone who thinks they are ill and actually isn't.

nradov 2y ago
That is medical misinformation. It is totally irrational for most people to be frightened of misdiagnosis. The diagnostic criteria for the most common chronic diseases such as diabetes, heart failure, obesity, arthritis, hearing loss, and depression are reliable and straightforward. Misdiagnosis is only a serious concern for more rare conditions or atypical presentations. Occasional misdiagnoses do occur but let's not contribute to hypochondria by exaggerating the problem.
- mapt 2y ago
  The medical field has identified around 10,000 "rare diseases" that are estimated to affect fewer than 200,000 Americans each. On net, 10% of the population is estimated to be afflicted by a rare disease, with rampant underdiagnosis. It's less "misdiagnosis" in that the picture is being identified clearly as something other than what it is, but that few doctors have the entire picture, recognize it as one unified syndrome, and recall the title of that syndrome. The mind also loses most information that goes unused, so a disorder that a doctor only encounters once per every thousand years of practice would need a great deal of luck to be recognized, especially by someone who isn't just out of med school. Even something seen only every hundred years or every ten years of practice is usually missed. There are lots of zebras out there that we're calling horses. https://www.ncbi.nlm.nih.gov/books/NBK56184/ https://www.ncbi.nlm.nih.gov/books/NBK56184/ > To have a rare disease is often to have a condition that goes undiagnosed for years while concerned physicians who have never seen the condition before may offer one diagnosis and then search for another when new or advancing symptoms belie the original diagnosis. Once accurately diagnosed, patients with rare conditions may be treated by physicians who have little evidence or guidance to help them—physicians who may experience the frustration imagined by the patient quoted above. Particularly when a condition is extremely rare, patients and families frequently have to travel long distances to consult with the few experts who have experience in treating and studying their rare diseases; patients and their families may even relocate to make access easier. Although the features of specific rare diseases can differ in myriad ways, the effects on life and functioning are often similar and are emotionally and financially devastating for the affected individuals and their families. Patients and family members may feel isolated and alone as they face the challenges of finding helpful information, learning a new medical language, and generally charting their way in a daunting new world. > As described in Chapter 1, some rare conditions are extremely rare, found in only a few or a few dozen people. Others occur in hundreds, thousands, or as many as 200,000 people in the United States. Many are genetic in origin or have a genetic component. Others arise from exposure to infections or toxins, from faulty immune responses, or occasionally from adverse responses to therapeutic interventions for other conditions. For many rare conditions, the causes are frustratingly elusive. > Although people may think of a rare disease as something that happens to someone else, rare diseases can afflict anyone, at any age. They can be acute or chronic. Many are debilitating and present an ongoing risk of death. Some are inevitably fatal given current medical options. Approved therapies are available to treat several hundred of these conditions, but most currently have no therapy that cures or modifies the disease itself. One of the things that various AI expert systems would be great at compared to human doctors, is recognizing the possibility of rare diseases based on abundant data (or full body scans, for that matter) and proactively testing hypotheses. But... well... the only people with access to that data, the insurance companies, are strongly incentivized not to.
- pjc50 2y ago
  Not in that list, really prevalent (approximately 10% of women!), and frequently mis- or not-diagnosed: Endometriosis.
- deleted 2y ago
  [deleted]
- Paul-Craft 2y ago
  The question we should be asking isn't how easy is it to diagnose the X most common conditions. The question should be given someone goes to a doctor, what's the probability that their condition will be misdiagnosed. And further, what is the lifetime probability that someone will be misdiagnosed? Those numbers, I would wager, are significantly higher than the probability that anyone will be misdiagnosed with diabeetes, heart failure, obesity, arthritis, or hearing loss. Note, however, I've left off depression. This one actually does get missed somewhat frequently by primary physicians, in part because they don't think to screen for it, or they don't screen for it at an initial visit. Primary specialists tend to look for physical conditions first before moving on to mental health conditions. Continuing with the article's theme about women being misdiagnosed frequently, here's an abstract that notes depression in female patients being misdiagnosed at a rate of 30-50%: https://www.sciencedirect.com/science/article/abs/pii/S0277953696001591 https://www.sciencedirect.com/science/article/abs/pii/S02779.... So lets keep in mind that reliability of diagnosis of individual conditions, however common they may be, may have relatively little to do with the overall lifetime probability that someone will be misdiagnosed at some point in their life. Edit: Some even more shocking mental health misdiagnosis statistics from https://justpoint.com/knowledge-base/everything-you-need-to-know-about-mental-health-misdiagnosis/ https://justpoint.com/knowledge-base/everything-you-need-to-... > Misdiagnosis rates for major depressive disorders were at 65.9%, > Misdiagnosis for Bipolar disorders was at 92.7 percent, Panic disorder was at 85.8%, generalized anxiety disorder was 71.0 percent, and > Social anxiety disorder was 97.8%. Given that 1 out of 2 people will develop a diagnosable mental health issue in their lifetime according to https://hms.harvard.edu/news/half-worlds-population-will-experience-mental-health-disorder https://hms.harvard.edu/news/half-worlds-population-will-exp... this suggests a fairly high rate of overall misdiagnosis.
  - nradov 2y ago
    Depression screening is a standard HEDIS clinical quality measure. Some providers might still skip it and some patients slip through the cracks, but overall most patients who are receiving regular ongoing care do get occasionally screened for depression. Of course patients who never go in for an appointment don't get screened. There's certainly a gap with people who lack access to care or don't seek it out.
- y-c-o-m-b 2y ago
  This comment is so out of touch with the reality of the current medical system that I think you're in for a very rude awakening in the future. I can go on for days about all the stories I have to counteract this point. Even doctors themselves are feeling the diagnostic failure issues. My child's pediatrician went into the ER and said "I think my appendix is about to burst". They thought she was just being dramatic and they wanted to discharge her with Zofran and tell her to come back if it got worse. After hours of arguing with the ER doctors and nurses, she convinced them to do imaging. Boom, appendix about to burst. She had an operation 2 hours later.
  - nradov 2y ago
    I'm actually pretty in touch with the reality of the current medical system. There are plenty of stories about diagnostic failures but what does the data show? The vast majority of patients are diagnosed correctly, or misdiagnosed in a way that doesn't significantly impact outcomes. I think a lot of technologists have unrealistic expectations about healthcare. The reality is that most of it is still more art than science, and outcomes vary based on the skills of individuals in ways that usually impossible to accurately quantify. Anything involving biology is kind of squishy and uncertain. We should try to improve the state of clinical practice but we should also be thankful for how much it has already improved just within our lifetimes.
    - mapt 2y ago
      What data? Are you proposing that there is a reliable way to adjudicate ongoing misdiagnoses for rare or even common illnesses? It seems like the only ones likely to have any investigation are those that end up being lethal in the short term.
  - deleted 2y ago
    [deleted]
blackeyeblitzar 2y ago
I’ve had issues like this even for non chronic things. Repeated visits for an obvious or easy to determine diagnosis. Unwillingness to order certain blood tests or whatever. Sometimes it is because of health insurance rules, which is itself a problem since it forces me to deal with the big inconvenience and expense of several visits, but other times it is because of the doctor’s arbitrary unwillingness. One example that frustrated me recently was an issue that could be one of three things, each of which could be confirmed via a DNA test. The hospital’s genetics department was unwilling to just go ahead with the three different tests (they aren’t tested as part of a general DNA screen so it is three specific tests instead) even though it’s the fastest and least invasive way to diagnose. Instead they want an invasive surgical confirmation first, which is far more expensive and time consuming. They shared no good reason when I challenged this - just vague patronizing language that reiterated their unwillingness. In general I’m frustrated that patients can’t just order the exact tests they want. Why do I need a doctor’s consent for various blood draws? I should be able to pick from a menu and pay for whatever I want.
- nradov 2y ago
  Clinical reference labs allow patients to order many tests themselves through services like LabCorp onDemand or Questhealth. You can even order your own full genome sequence through specialized services such as Nebula Genomics. Those services might not be reimbursed by your health plan but they are available if you want them.
- Der_Einzige 2y ago
  This is why you do medical tourism to a country like Thailand. Deregulated medical systems mean that you can meet doctors who are empowered to give you any drug you want for like, 1 USD. If you get travelers sickness (half caused by gut bacteria), you can quickly get low level antibiotics which purges this and gets you back on your feet in a day or two. Not in America though, because the risk of “superbugs” means that everyone should struggle and be in serious avoidable pain. Imagine how livid I was when I got peptic ulcers and my idiot doctor tried to tell me it was “stress”. I reported his ass to my states medical board and linked the other examples of doctors through history who understood the bacterial cause of ulcers and were sanctioned by their own medical boards for using the right treatment before it was accepted. Don’t just accept their bullshit. Fight them every step of the way when you know you’re right.
agumonkey 2y ago
So often doctors go over your problems without care. Sometimes you describes 4 hard and 1 secondary symptoms you endured for a few months (to avoid being a trigger-happy hypocondriac). They'll only hear the harmless one and talk about it as if that was your main reason behind the visit. Pretty odd.
- nerdponx 2y ago
  Drunk man searching for keys under street light
- j-bos 2y ago
  Expertise doesn't equal immunity from the streetlight effect.
  - agumonkey 2y ago
    Maybe. There's also statistical fatigue. After hearing 100s of people complain about similar stuff you jump to conclusion. Or it may be disdain too.
- thegrim33 2y ago
  This resonates with me so much .. I used to think I was helping doctors by giving them as much detail as possible. It'd list all my symptoms, even minor ones, thinking that it's giving them the complete set of information to work from, that the more data I gave them about what's going on, the better their diagnosis would be, the better they'd be able to help me. In reality every time I did this they universally started to look at me odd, as if I was making things up, or overly anxious, or a hypochondriac, etc. When you list minor symptoms they interpret it as "this guy is complaining about nothing issues" and they start to write you off. It's infuriating when you give them all the symptoms, both major and minor, and they respond afterwards by just latching onto the minor issues and waving them away and telling me not to worry about it. There's just such a barrier to communication in such circumstances.
calibas 2y ago
I have a friend with Ehlers–Danlos syndrome, a rare connective-tissue disorder. She spent years in pain while the doctors told her there was nothing wrong, and that it was just in her head. It was only seven years ago that they updated diagnostic criteria to include her form of EDS, and it took her a few more years after that to get diagnosed. Now the doctors take her very seriously.
- 0xcde4c3db 2y ago
  Considering how common some version of this story is, and based on my own experiences as a patient, I'm convinced that most doctors lack a functional understanding of conditional probability. They seem to think that if the prevalence of a disease in the general population (or a specific patient's age/sex/racial demographic) is low, then the probability of someone presenting with signs and symptoms of the disease having it is also low, even if there's no better explanation.
  - jimmaswell 2y ago
    Could there be a hundred people claiming fantastical symptoms for every one person who's genuine?
    - Palomides 2y ago
      the reality is that very close to 100% of people have ambiguous, transient pain and a large number of them come to the doctor asking for something to be done (and also mix in people who are fishing for pain meds, really are hypochondriacs, or really are experiencing something psychogenic) in a practical sense, it's extremely difficult to narrow that down to a specific actionable cause, and the system is simply not set up to deal with this stuff
  - atahanacar 2y ago
    >They seem to think that if the prevalence of a disease in the general population (or a specific patient's age/sex/racial demographic) is low, then the probability of someone presenting with signs and symptoms of the disease having it is also low Because it is also actually low. Signs and symptoms aren't exclusive to specific diseases.
bufordtwain 2y ago
I've also noticed that they give you a very short time to explain your problem and symptoms and it's not unusual for them to be misinterpreted and/or misunderstood. Sometimes assumptions are made and the doctor gets an incorrect picture in their head. It's a bit like when someone gets interviewed for a newspaper story and when the story is published it has obvious errors.
- AStonesThrow 2y ago
  I often read up on stuff to learn the differential diagnoses, and the unique symptom combinations that could indicate a specific diagnosis. Then I go tell a physician, and they throw it all out the window. The pharmacist has a sign posted reading, "Your Google Search Won't Outweigh My Degrees and Qualifications." Don't try to be well-informed on biomedicine, because the knowledge will be counterproductive.
  - PaulHoule 2y ago
    Kinda funny but I have the opposite experience. I go see my doc and tell them what I researched and often they tell me they are impressed, sometimes they tell me they think my conclusion is probably wrong and tell me why they disagree. However I am usually searching PubMed or the library at my Uni and not searching Google or YouTube.
AStonesThrow 2y ago
Diagnoses are driven by treatments and not by patient health. I approached my PCP with a genuine complaint in the category of intermittent "medical emergency". The PCP diagnosed an organ and prescribed a targeted medication without even asking me clarifying questions, much less screening or imaging (except to rule out cancer as a cause, because that would've been more profitable.) Later I returned to the PCP with questions. How did you diagnose this organ pathology without imaging? Even if you imaged it now, you have no baseline image to compare. Did you rule out other causes? Did you even evaluate my experiences, or review the history of incidents that would definitely be germane to the case? I collected a lot of evidence that the diagnosis was wrong, but I eventually hit a brick wall when trying to secure a referral and visit with a specialist. Nope, it was "take two of these and call me in the morning". Due to the prescription's targeted nature, the next time I reported taking it, the corresponding diagnosis was duly entered in the chart! Post hoc ergo propter hoc???
freeopinion 2y ago
I've often been glad not to be held to the standards of doctors. How many guesses does it take to figure out why a copy onto the clipboard didn't work? Or why a shift+middle-drag panned instead of rotating? Most of my troubleshooting doesn't involve million-dollar equipment and hours of travel. If I was forced to troubleshoot the way doctors have to do--with real human pain and weeks between a visit and a lab test and another visit and two fights with insurance in between, and trying to get by with the $400 test instead of the $4000 test and an xray instead of an exploratory surgery. Tech people do complicated troubleshooting all the time. Sometimes we test an idea in 15 minutes to rule something out. Sometimes we just comment out 20 lines of code and recompile. Sometimes we have to schedule a system failover and make sure we've got a really good plan to justify the cost and inconvenience. But mostly it's 3 or 4 or 10 guesses to narrow things down and we don't sweat it. I mean, if a mouse isn't moving, reboot. If it still doesn't move, swap in a different mouse. If it still isn't working check the driver... If a doctor tried that approach with your hip...

nradov 2y ago

That is medical misinformation. It is totally irrational for most people to be frightened of misdiagnosis. The diagnostic criteria for the most common chronic diseases such as diabetes, heart failure, obesity, arthritis, hearing loss, and depression are reliable and straightforward. Misdiagnosis is only a serious concern for more rare conditions or atypical presentations. Occasional misdiagnoses do occur but let's not contribute to hypochondria by exaggerating the problem.

mapt 2y ago
The medical field has identified around 10,000 "rare diseases" that are estimated to affect fewer than 200,000 Americans each. On net, 10% of the population is estimated to be afflicted by a rare disease, with rampant underdiagnosis. It's less "misdiagnosis" in that the picture is being identified clearly as something other than what it is, but that few doctors have the entire picture, recognize it as one unified syndrome, and recall the title of that syndrome. The mind also loses most information that goes unused, so a disorder that a doctor only encounters once per every thousand years of practice would need a great deal of luck to be recognized, especially by someone who isn't just out of med school. Even something seen only every hundred years or every ten years of practice is usually missed. There are lots of zebras out there that we're calling horses. https://www.ncbi.nlm.nih.gov/books/NBK56184/ https://www.ncbi.nlm.nih.gov/books/NBK56184/ > To have a rare disease is often to have a condition that goes undiagnosed for years while concerned physicians who have never seen the condition before may offer one diagnosis and then search for another when new or advancing symptoms belie the original diagnosis. Once accurately diagnosed, patients with rare conditions may be treated by physicians who have little evidence or guidance to help them—physicians who may experience the frustration imagined by the patient quoted above. Particularly when a condition is extremely rare, patients and families frequently have to travel long distances to consult with the few experts who have experience in treating and studying their rare diseases; patients and their families may even relocate to make access easier. Although the features of specific rare diseases can differ in myriad ways, the effects on life and functioning are often similar and are emotionally and financially devastating for the affected individuals and their families. Patients and family members may feel isolated and alone as they face the challenges of finding helpful information, learning a new medical language, and generally charting their way in a daunting new world. > As described in Chapter 1, some rare conditions are extremely rare, found in only a few or a few dozen people. Others occur in hundreds, thousands, or as many as 200,000 people in the United States. Many are genetic in origin or have a genetic component. Others arise from exposure to infections or toxins, from faulty immune responses, or occasionally from adverse responses to therapeutic interventions for other conditions. For many rare conditions, the causes are frustratingly elusive. > Although people may think of a rare disease as something that happens to someone else, rare diseases can afflict anyone, at any age. They can be acute or chronic. Many are debilitating and present an ongoing risk of death. Some are inevitably fatal given current medical options. Approved therapies are available to treat several hundred of these conditions, but most currently have no therapy that cures or modifies the disease itself. One of the things that various AI expert systems would be great at compared to human doctors, is recognizing the possibility of rare diseases based on abundant data (or full body scans, for that matter) and proactively testing hypotheses. But... well... the only people with access to that data, the insurance companies, are strongly incentivized not to.
pjc50 2y ago
Not in that list, really prevalent (approximately 10% of women!), and frequently mis- or not-diagnosed: Endometriosis.
deleted 2y ago
[deleted]
Paul-Craft 2y ago
The question we should be asking isn't how easy is it to diagnose the X most common conditions. The question should be given someone goes to a doctor, what's the probability that their condition will be misdiagnosed. And further, what is the lifetime probability that someone will be misdiagnosed? Those numbers, I would wager, are significantly higher than the probability that anyone will be misdiagnosed with diabeetes, heart failure, obesity, arthritis, or hearing loss. Note, however, I've left off depression. This one actually does get missed somewhat frequently by primary physicians, in part because they don't think to screen for it, or they don't screen for it at an initial visit. Primary specialists tend to look for physical conditions first before moving on to mental health conditions. Continuing with the article's theme about women being misdiagnosed frequently, here's an abstract that notes depression in female patients being misdiagnosed at a rate of 30-50%: https://www.sciencedirect.com/science/article/abs/pii/S0277953696001591 https://www.sciencedirect.com/science/article/abs/pii/S02779.... So lets keep in mind that reliability of diagnosis of individual conditions, however common they may be, may have relatively little to do with the overall lifetime probability that someone will be misdiagnosed at some point in their life. Edit: Some even more shocking mental health misdiagnosis statistics from https://justpoint.com/knowledge-base/everything-you-need-to-know-about-mental-health-misdiagnosis/ https://justpoint.com/knowledge-base/everything-you-need-to-... > Misdiagnosis rates for major depressive disorders were at 65.9%, > Misdiagnosis for Bipolar disorders was at 92.7 percent, Panic disorder was at 85.8%, generalized anxiety disorder was 71.0 percent, and > Social anxiety disorder was 97.8%. Given that 1 out of 2 people will develop a diagnosable mental health issue in their lifetime according to https://hms.harvard.edu/news/half-worlds-population-will-experience-mental-health-disorder https://hms.harvard.edu/news/half-worlds-population-will-exp... this suggests a fairly high rate of overall misdiagnosis.
- nradov 2y ago
  Depression screening is a standard HEDIS clinical quality measure. Some providers might still skip it and some patients slip through the cracks, but overall most patients who are receiving regular ongoing care do get occasionally screened for depression. Of course patients who never go in for an appointment don't get screened. There's certainly a gap with people who lack access to care or don't seek it out.
y-c-o-m-b 2y ago
This comment is so out of touch with the reality of the current medical system that I think you're in for a very rude awakening in the future. I can go on for days about all the stories I have to counteract this point. Even doctors themselves are feeling the diagnostic failure issues. My child's pediatrician went into the ER and said "I think my appendix is about to burst". They thought she was just being dramatic and they wanted to discharge her with Zofran and tell her to come back if it got worse. After hours of arguing with the ER doctors and nurses, she convinced them to do imaging. Boom, appendix about to burst. She had an operation 2 hours later.
- nradov 2y ago
  I'm actually pretty in touch with the reality of the current medical system. There are plenty of stories about diagnostic failures but what does the data show? The vast majority of patients are diagnosed correctly, or misdiagnosed in a way that doesn't significantly impact outcomes. I think a lot of technologists have unrealistic expectations about healthcare. The reality is that most of it is still more art than science, and outcomes vary based on the skills of individuals in ways that usually impossible to accurately quantify. Anything involving biology is kind of squishy and uncertain. We should try to improve the state of clinical practice but we should also be thankful for how much it has already improved just within our lifetimes.
  - mapt 2y ago
    What data? Are you proposing that there is a reliable way to adjudicate ongoing misdiagnoses for rare or even common illnesses? It seems like the only ones likely to have any investigation are those that end up being lethal in the short term.
- deleted 2y ago
  [deleted]

blackeyeblitzar 2y ago

I’ve had issues like this even for non chronic things. Repeated visits for an obvious or easy to determine diagnosis. Unwillingness to order certain blood tests or whatever. Sometimes it is because of health insurance rules, which is itself a problem since it forces me to deal with the big inconvenience and expense of several visits, but other times it is because of the doctor’s arbitrary unwillingness. One example that frustrated me recently was an issue that could be one of three things, each of which could be confirmed via a DNA test. The hospital’s genetics department was unwilling to just go ahead with the three different tests (they aren’t tested as part of a general DNA screen so it is three specific tests instead) even though it’s the fastest and least invasive way to diagnose. Instead they want an invasive surgical confirmation first, which is far more expensive and time consuming. They shared no good reason when I challenged this - just vague patronizing language that reiterated their unwillingness. In general I’m frustrated that patients can’t just order the exact tests they want. Why do I need a doctor’s consent for various blood draws? I should be able to pick from a menu and pay for whatever I want.

nradov 2y ago
Clinical reference labs allow patients to order many tests themselves through services like LabCorp onDemand or Questhealth. You can even order your own full genome sequence through specialized services such as Nebula Genomics. Those services might not be reimbursed by your health plan but they are available if you want them.
Der_Einzige 2y ago
This is why you do medical tourism to a country like Thailand. Deregulated medical systems mean that you can meet doctors who are empowered to give you any drug you want for like, 1 USD. If you get travelers sickness (half caused by gut bacteria), you can quickly get low level antibiotics which purges this and gets you back on your feet in a day or two. Not in America though, because the risk of “superbugs” means that everyone should struggle and be in serious avoidable pain. Imagine how livid I was when I got peptic ulcers and my idiot doctor tried to tell me it was “stress”. I reported his ass to my states medical board and linked the other examples of doctors through history who understood the bacterial cause of ulcers and were sanctioned by their own medical boards for using the right treatment before it was accepted. Don’t just accept their bullshit. Fight them every step of the way when you know you’re right.

agumonkey 2y ago

So often doctors go over your problems without care. Sometimes you describes 4 hard and 1 secondary symptoms you endured for a few months (to avoid being a trigger-happy hypocondriac). They'll only hear the harmless one and talk about it as if that was your main reason behind the visit. Pretty odd.

nerdponx 2y ago
Drunk man searching for keys under street light
j-bos 2y ago
Expertise doesn't equal immunity from the streetlight effect.
- agumonkey 2y ago
  Maybe. There's also statistical fatigue. After hearing 100s of people complain about similar stuff you jump to conclusion. Or it may be disdain too.
thegrim33 2y ago
This resonates with me so much .. I used to think I was helping doctors by giving them as much detail as possible. It'd list all my symptoms, even minor ones, thinking that it's giving them the complete set of information to work from, that the more data I gave them about what's going on, the better their diagnosis would be, the better they'd be able to help me. In reality every time I did this they universally started to look at me odd, as if I was making things up, or overly anxious, or a hypochondriac, etc. When you list minor symptoms they interpret it as "this guy is complaining about nothing issues" and they start to write you off. It's infuriating when you give them all the symptoms, both major and minor, and they respond afterwards by just latching onto the minor issues and waving them away and telling me not to worry about it. There's just such a barrier to communication in such circumstances.

calibas 2y ago

I have a friend with Ehlers–Danlos syndrome, a rare connective-tissue disorder. She spent years in pain while the doctors told her there was nothing wrong, and that it was just in her head. It was only seven years ago that they updated diagnostic criteria to include her form of EDS, and it took her a few more years after that to get diagnosed. Now the doctors take her very seriously.

0xcde4c3db 2y ago
Considering how common some version of this story is, and based on my own experiences as a patient, I'm convinced that most doctors lack a functional understanding of conditional probability. They seem to think that if the prevalence of a disease in the general population (or a specific patient's age/sex/racial demographic) is low, then the probability of someone presenting with signs and symptoms of the disease having it is also low, even if there's no better explanation.
- jimmaswell 2y ago
  Could there be a hundred people claiming fantastical symptoms for every one person who's genuine?
  - Palomides 2y ago
    the reality is that very close to 100% of people have ambiguous, transient pain and a large number of them come to the doctor asking for something to be done (and also mix in people who are fishing for pain meds, really are hypochondriacs, or really are experiencing something psychogenic) in a practical sense, it's extremely difficult to narrow that down to a specific actionable cause, and the system is simply not set up to deal with this stuff
- atahanacar 2y ago
  >They seem to think that if the prevalence of a disease in the general population (or a specific patient's age/sex/racial demographic) is low, then the probability of someone presenting with signs and symptoms of the disease having it is also low Because it is also actually low. Signs and symptoms aren't exclusive to specific diseases.

bufordtwain 2y ago

I've also noticed that they give you a very short time to explain your problem and symptoms and it's not unusual for them to be misinterpreted and/or misunderstood. Sometimes assumptions are made and the doctor gets an incorrect picture in their head. It's a bit like when someone gets interviewed for a newspaper story and when the story is published it has obvious errors.

AStonesThrow 2y ago
I often read up on stuff to learn the differential diagnoses, and the unique symptom combinations that could indicate a specific diagnosis. Then I go tell a physician, and they throw it all out the window. The pharmacist has a sign posted reading, "Your Google Search Won't Outweigh My Degrees and Qualifications." Don't try to be well-informed on biomedicine, because the knowledge will be counterproductive.
- PaulHoule 2y ago
  Kinda funny but I have the opposite experience. I go see my doc and tell them what I researched and often they tell me they are impressed, sometimes they tell me they think my conclusion is probably wrong and tell me why they disagree. However I am usually searching PubMed or the library at my Uni and not searching Google or YouTube.

AStonesThrow 2y ago

Diagnoses are driven by treatments and not by patient health. I approached my PCP with a genuine complaint in the category of intermittent "medical emergency". The PCP diagnosed an organ and prescribed a targeted medication without even asking me clarifying questions, much less screening or imaging (except to rule out cancer as a cause, because that would've been more profitable.) Later I returned to the PCP with questions. How did you diagnose this organ pathology without imaging? Even if you imaged it now, you have no baseline image to compare. Did you rule out other causes? Did you even evaluate my experiences, or review the history of incidents that would definitely be germane to the case? I collected a lot of evidence that the diagnosis was wrong, but I eventually hit a brick wall when trying to secure a referral and visit with a specialist. Nope, it was "take two of these and call me in the morning". Due to the prescription's targeted nature, the next time I reported taking it, the corresponding diagnosis was duly entered in the chart! Post hoc ergo propter hoc???

freeopinion 2y ago

I've often been glad not to be held to the standards of doctors. How many guesses does it take to figure out why a copy onto the clipboard didn't work? Or why a shift+middle-drag panned instead of rotating? Most of my troubleshooting doesn't involve million-dollar equipment and hours of travel. If I was forced to troubleshoot the way doctors have to do--with real human pain and weeks between a visit and a lab test and another visit and two fights with insurance in between, and trying to get by with the $400 test instead of the $4000 test and an xray instead of an exploratory surgery. Tech people do complicated troubleshooting all the time. Sometimes we test an idea in 15 minutes to rule something out. Sometimes we just comment out 20 lines of code and recompile. Sometimes we have to schedule a system failover and make sure we've got a really good plan to justify the cost and inconvenience. But mostly it's 3 or 4 or 10 guesses to narrow things down and we don't sweat it. I mean, if a mouse isn't moving, reboot. If it still doesn't move, swap in a different mouse. If it still isn't working check the driver... If a doctor tried that approach with your hip...