7 ms·

My doctor gave a wrong neurological diagnosis. I should know: I'm a neurologist

39 points by MilnerRoute 6y ago

tomohawk 6y ago
With covid, many hospitals have locked down, preventing family members from entering to advocate for their family members who are there. To gain access, some hospital require you be tested, and then this test has to be documented properly so that you can get in, which takes days.
- mindslight 6y ago
  If you think hospitals are bad, try inpatient rehabs. Full lock down, through-window visits after approval for an appointment where they take your temperature etc, limited to once per week. Covid has encouraged a bit of giving-understanding, but for the most part it has just exacerbated the existing bad incentives and draconian top-down policy regimes. None of these places welcome oversight, for the reasons spelled out by the article. FWIW a close relative with multiple comorbidities got Covid from a hospital, likely when they decided it was prudent to cycle three different roommates through their room in as many days. Then the hospital wanted to discharge them when they were still infectious! Hospital policies are based around ass-covering and not actually stopping the spread. Never got any calls from contact tracing either. Thankfully my relative ended up beating it.
raincom 6y ago
Inept specialists are there for money, and protected by the hospital administrators and by the reputation of these hospitals. From the article: "The spinal consultant tested my reflexes with the side of his hand. When I asked about his reflex hammer he replied that he didn’t have one or need one — even though this is tantamount to evaluating the heart or lungs without a stethoscope."
- phobosanomaly 6y ago
  As a counter-example, a master carpenter need not precisely measure every single rough-cut with a machinist's micrometer. Sometimes bonking the knee with a gizmo is just as good as bonking the knee with your hand, especially if you've spent the past 30 years bonking knees for a living.
  - notRobot 6y ago
    Are you a medical professional? Do you have any sources for this claim?
    - phobosanomaly 6y ago
      Sure thing: Orient, Jane M. Sapira's Art & Science of Bedside Diagnosis 5th Ed. Chapter 1: The Art of Clinical Examination. P5. "My original reflex hammer from medical school was simply a round rubber ball about the diameter of a nickel, mounted on a handle. This illustrates the point that any hammer is satisfactory if the examiner knows where to strike the tendon. I have even used the diaphragm of a Sprague stethoscope, and a former resident, a Vanderbuilt graduate, used her knuckle. Some physicians use the tips of their fingers, a tool that is always available." I don't think a citation is really necessary in this case. You're tapping a tendon. That's all. You don't need special equipment. I wouldn't make the same argument for a stethoscope. But if you want, Sapira is a really fun textbook. It's even a fun read for a layperson.
      - medntech 6y ago
        I use a reflex hammer for reflexes, especially in kids. You definitely can use your hands too but it takes more skill and practice that I don't have.
        phobosanomaly 6y ago
        That's why I like Sapira. It's like the grizzled old attending who's forgotten more than you'll learn over your entire career, going about the physical exam like a master craftsman. Using their hands, eyes, ears, nose to diagnose. I'll probably never be at that level of skill either, but man it's cool to watch and read about.
ncmncm 6y ago
I have had a lot more experience of wrong than of correct medical judgment. The number if deaths caused every year by medical overconfidence and sloppiness is astounding to contemplate.
- phobosanomaly 6y ago
  Although overconfidence and sloppiness likely play some role, please entertain the possibility that to err is human and many healthcare providers are doing the best they can considering the time and workload they are given. Most doctors are horrified at the thought of their mistakes harming a patient, and if you had a cool solution or idea to reduce that, most doctors would love to hear.
  - lhuser123 6y ago
    Maybe I’m out of luck, but can honestly say it’s been very difficult to find the kind of doctor you describe.
    - phobosanomaly 6y ago
      I think the most tragic thing of all is that many doctors find it difficult to be the kind of doctor you would not be disappointed by. People on both sides of the exam table are not thrilled with the current system. I've watched grown, experienced doctors break down and cry over what they have seen, the expectations and pressures placed on them, the type of things they've had to tell people, mistakes they've made, etc. It's not pretty. They're not building apps for a living while working from home, they're trying to fix ill people within the constraints of human behavior and mother nature, and that is a rough job. Many get paid a lot, many don't, but for people who went into it with the desire to help people you can't just buy off the dying kids and the lifelong smokers who killed themselves one cigarette at a time for 40-years, and the diabetic feet, and sexual assaults, and the dead bodies harvested of organs looking up at you after the surgeons have left the room, the frequent flyers, the smell of bloody feces, the smell of infection, everything else that can possible go wrong with a human being. Not to mention the over a decade of school, and hundreds and hundreds of hours of documenting for insurance, and covering your ass for each time you get dragged into court to testify over what at any other job would be a benign clerical error.
tpmoney 6y ago
Having a chronic and/or complex health issue is a good way to find out just how many doctors don't deserve to be practicing medicine. I've had doctors tell me they don't treat conditions that their own practice's website says they treat. I've had doctors read letters and notes from my other physicians and claim the letter said the opposite of what they did (and then when called out on this discrepancy, refuse to acknowledge it and tell me I can either accept what they're doing or leave. I left.). I've had doctors prescribe medications, and then when when I encountered the very same side effects listed in the "stop taking this right away and call your doctor" was told I can't be experiencing that side effect because "it never really happens". I've had doctors tell me to do one thing, and then when a different doctor called them to ask about what they said, claim they never said that at all (despite having the written prescription for what they said). I've had phenomenal doctors too, ones who a lack of coverage for is reason enough for me to turn down a job or to choose a more expensive insurance plan. But finding those "golden" doctors in the sea of average and below average doctors has been a nearly decade long process. And it's been really easy to see how people with complex medical issues can get suckered by snake oil salesmen and grifters. When you spend so much time fighting with the medical system and getting no relief, finding someone who will pretend to give a damn is a form of relief in and of itself. And I have never once in all the times I've filed a complaint with a hospital, or office or even state medical boards gotten any response other than "We've investigated ourselves and determined we did nothing wrong". It's a definite problem and there really needs to be a better process. The state medical board claime they don't dispute physician diagnosis, just evaluate the care of the provider within the scope of that diagnosis. So if your doctor says during your 10th visit for severe stomach pains in 3 weeks that you have gas and gives you Gas-X, and it turns out that you had appendicitis, the medical board doesn't intervene, because Gas-X was the appropriate treatment for the diagnosis. And the hospital patient advocate/experience folks aren't in the business of pissing off the doctors they work with every day. And too often doctors are unwilling to criticize the work or actions of another doctor, even when blatantly wrong. There badly needs to be an independent patient advocacy and dispute resolution that is aligned with the interests of the patient, not the doctors.
- tdrp 6y ago
  For the same exact issue, you can go to a cardio and get prescribed some cardio-related medication, go to a neuro and get prescribed neuro-related medication, etc. To a hammer everything is a nail. I was put on antibiotics, beta blockers, topamax and a couple of more serious medication for what was ultimately just a vitamin D deficiency that they had been too narrow-sighted to try catching. I lost a lot of respect for the medical profession at that time.
tdrp 6y ago
Here is my story. A few years after coming to the US I started developing some neurological symptoms: confusion, dizziness, lightheadedness. 1. The GP first blamed it on dehydration and sent me home and told me to drink plenty of water. Went back a week later and she prescribed antibiotics thinking it was some kind of infection somewhere. "Let's just try the strongest antibiotics and see". I did the full course despite some non-trivial side effects and was still not better, but at that point my heartbeat had gotten a bit faster from the whole situation so I was referred to a cardio. 2. Seeing a fast heartbeat, the cardiologist put me, a 24-year old at the time, on beta blockers. Two weeks later, still no improvement. 3. So I was referred to a neurologist. Did a brain MRI, did not find anything so he assumed it was some kind of epilepsy/migraine combo and put me on something called topamax. Mind you, all these prescriptions were given to me within 10-15 minutes of seeing those doctors. Topamax had its own side effects and my health at that point had spiraled out of control. Reported the side effects to the neuro and he thought he'd give me one more medication to counter the other medication's side effects. When I went back to the GP they said the whole thing was probably caused by "stress". 4. I just stopped all medication, got sick leave from my job, and went back to my home country for a couple of months. I asked my old family doctor to just do a general check-up and see if anything was up. Within weeks my situation had magically started to improve. Turned out my vitamin D levels were at 7 (forgot the unit, but the minimum was like 30). None of the doctors thought about it, every doctor had arrogantly assumed that the problem could only be from their own field (neuro assumed it was neurological, cardio assumed it was cardiac), and literally none of them put the slightest amount of effort into looking at the whole picture. This was in one of the most affluent areas and those were supposedly some of the "good" doctors. I am still convinced that a machine trained model would have performed significantly better than these people since they were literally like bots following a rule book. Side corollary, if you are from a sunny country and move to a state or country in Northern latitudes, keep in mind that vitamin D deficiency can slowly creep on you and basically turn you into a moron. This should be a PSA.
- medntech 6y ago
  How do you know it was low vitamin D causing your symptoms?
Fezzik 6y ago
Similar story: I went to the doctor with sharp hip pain a few years back, aged 32, relatively fit (running 5 miles every workday and swimming 1+ mile most days), but the hip pain was getting worse by the day. I was referred to a surgeon who wanted to re-route tendons or ligaments in my hips. It made no sense to me. I realized, with a little reflection, that I had been wearing heeled dress shoes far more than I normally did. I started wearing zero-drop shoes and the pain went away in a few days. Neither the GP nor the surgeon did any digging about possible causes.
- tdrp 6y ago
  Dealing with some specialists feels like dealing with automated bots. They almost sound like they follow a script down to the letter. If A then prescribe B, then C. And almost never look at the big picture. And every symptom that happens they tend to shoehorn into their own specialization, and not realize that it might be an indication that the problem lies elsewhere.
  - lhuser123 6y ago
    And after a few minutes they start signaling that the conversation is about to end.
  - phobosanomaly 6y ago
    In medicine there is a lot of emphasis placed behind evidence-based approaches. The alternative is an experience-based approach (the more fluid approach you're describing). The problem with experience-based approaches are that they're hard to evaluate since it's impossible to standardize, and they may open the provider up to risk of litigation. As a result, an evidence-based mindset may result in the algorithmic behavior you describe. We don't have a good codified way to standardize the practitioner's balance between evidence-based and experience-based, so it's a bit up in the air right now. Medicine is really, really hard to do well. Love to hear from anyone with a different take.
    - alexvoda 6y ago
      This is going to sound harsh but I feel it is true and inevitable. If you are not using an experience-based approach you are not doing your job. People seek doctors precisely because they are supposed to have experience. Medical school is many years long precisely so you can build that experience. If you just execute algorithms based on evidence you are a prime target for automation. Those in my profession (software) will automate your role away and do it better and faster and more available and more reliable. Because you make it easy for us. We may be cursed to solve only 80% of any problem but if you solve even less, we still end up ahead. My point, all of the interest and investment in AI diagnosis (IBM Watson comes to mind, but the field is decades old) is caused precisely by the poor practices in the medical field. It is of course naive to think we will solve medicine with software. But we only need to be better than average just like self driving cars are not aming to be perfect, just better than average. Be a HUMAN doctor and we will need AGI to replace you. Be a robot and you will be replaced by an actual robot. (note: I do not believe technology is the solution here. I am just a bit pissed after a doctor prescribed stuff without even touching or looking at an acquaintance.)
bionhoward 6y ago
The whole idea of diagnosis as a point estimate is inherently flawed. The deliverable for a diagnostician ought to be a distribution over diagnoses. Duh. Learn 2 probability, docs

39 points by MilnerRoute 6y ago

With covid, many hospitals have locked down, preventing family members from entering to advocate for their family members who are there. To gain access, some hospital require you be tested, and then this test has to be documented properly so that you can get in, which takes days.

mindslight 6y ago
If you think hospitals are bad, try inpatient rehabs. Full lock down, through-window visits after approval for an appointment where they take your temperature etc, limited to once per week. Covid has encouraged a bit of giving-understanding, but for the most part it has just exacerbated the existing bad incentives and draconian top-down policy regimes. None of these places welcome oversight, for the reasons spelled out by the article. FWIW a close relative with multiple comorbidities got Covid from a hospital, likely when they decided it was prudent to cycle three different roommates through their room in as many days. Then the hospital wanted to discharge them when they were still infectious! Hospital policies are based around ass-covering and not actually stopping the spread. Never got any calls from contact tracing either. Thankfully my relative ended up beating it.

raincom 6y ago

Inept specialists are there for money, and protected by the hospital administrators and by the reputation of these hospitals. From the article: "The spinal consultant tested my reflexes with the side of his hand. When I asked about his reflex hammer he replied that he didn’t have one or need one — even though this is tantamount to evaluating the heart or lungs without a stethoscope."

phobosanomaly 6y ago
As a counter-example, a master carpenter need not precisely measure every single rough-cut with a machinist's micrometer. Sometimes bonking the knee with a gizmo is just as good as bonking the knee with your hand, especially if you've spent the past 30 years bonking knees for a living.
- notRobot 6y ago
  Are you a medical professional? Do you have any sources for this claim?
  - phobosanomaly 6y ago
    Sure thing: Orient, Jane M. Sapira's Art & Science of Bedside Diagnosis 5th Ed. Chapter 1: The Art of Clinical Examination. P5. "My original reflex hammer from medical school was simply a round rubber ball about the diameter of a nickel, mounted on a handle. This illustrates the point that any hammer is satisfactory if the examiner knows where to strike the tendon. I have even used the diaphragm of a Sprague stethoscope, and a former resident, a Vanderbuilt graduate, used her knuckle. Some physicians use the tips of their fingers, a tool that is always available." I don't think a citation is really necessary in this case. You're tapping a tendon. That's all. You don't need special equipment. I wouldn't make the same argument for a stethoscope. But if you want, Sapira is a really fun textbook. It's even a fun read for a layperson.
    - medntech 6y ago
      I use a reflex hammer for reflexes, especially in kids. You definitely can use your hands too but it takes more skill and practice that I don't have.
      - phobosanomaly 6y ago
        That's why I like Sapira. It's like the grizzled old attending who's forgotten more than you'll learn over your entire career, going about the physical exam like a master craftsman. Using their hands, eyes, ears, nose to diagnose. I'll probably never be at that level of skill either, but man it's cool to watch and read about.

ncmncm 6y ago

I have had a lot more experience of wrong than of correct medical judgment. The number if deaths caused every year by medical overconfidence and sloppiness is astounding to contemplate.

phobosanomaly 6y ago
Although overconfidence and sloppiness likely play some role, please entertain the possibility that to err is human and many healthcare providers are doing the best they can considering the time and workload they are given. Most doctors are horrified at the thought of their mistakes harming a patient, and if you had a cool solution or idea to reduce that, most doctors would love to hear.
- lhuser123 6y ago
  Maybe I’m out of luck, but can honestly say it’s been very difficult to find the kind of doctor you describe.
  - phobosanomaly 6y ago
    I think the most tragic thing of all is that many doctors find it difficult to be the kind of doctor you would not be disappointed by. People on both sides of the exam table are not thrilled with the current system. I've watched grown, experienced doctors break down and cry over what they have seen, the expectations and pressures placed on them, the type of things they've had to tell people, mistakes they've made, etc. It's not pretty. They're not building apps for a living while working from home, they're trying to fix ill people within the constraints of human behavior and mother nature, and that is a rough job. Many get paid a lot, many don't, but for people who went into it with the desire to help people you can't just buy off the dying kids and the lifelong smokers who killed themselves one cigarette at a time for 40-years, and the diabetic feet, and sexual assaults, and the dead bodies harvested of organs looking up at you after the surgeons have left the room, the frequent flyers, the smell of bloody feces, the smell of infection, everything else that can possible go wrong with a human being. Not to mention the over a decade of school, and hundreds and hundreds of hours of documenting for insurance, and covering your ass for each time you get dragged into court to testify over what at any other job would be a benign clerical error.

tpmoney 6y ago

Having a chronic and/or complex health issue is a good way to find out just how many doctors don't deserve to be practicing medicine. I've had doctors tell me they don't treat conditions that their own practice's website says they treat. I've had doctors read letters and notes from my other physicians and claim the letter said the opposite of what they did (and then when called out on this discrepancy, refuse to acknowledge it and tell me I can either accept what they're doing or leave. I left.). I've had doctors prescribe medications, and then when when I encountered the very same side effects listed in the "stop taking this right away and call your doctor" was told I can't be experiencing that side effect because "it never really happens". I've had doctors tell me to do one thing, and then when a different doctor called them to ask about what they said, claim they never said that at all (despite having the written prescription for what they said). I've had phenomenal doctors too, ones who a lack of coverage for is reason enough for me to turn down a job or to choose a more expensive insurance plan. But finding those "golden" doctors in the sea of average and below average doctors has been a nearly decade long process. And it's been really easy to see how people with complex medical issues can get suckered by snake oil salesmen and grifters. When you spend so much time fighting with the medical system and getting no relief, finding someone who will pretend to give a damn is a form of relief in and of itself. And I have never once in all the times I've filed a complaint with a hospital, or office or even state medical boards gotten any response other than "We've investigated ourselves and determined we did nothing wrong". It's a definite problem and there really needs to be a better process. The state medical board claime they don't dispute physician diagnosis, just evaluate the care of the provider within the scope of that diagnosis. So if your doctor says during your 10th visit for severe stomach pains in 3 weeks that you have gas and gives you Gas-X, and it turns out that you had appendicitis, the medical board doesn't intervene, because Gas-X was the appropriate treatment for the diagnosis. And the hospital patient advocate/experience folks aren't in the business of pissing off the doctors they work with every day. And too often doctors are unwilling to criticize the work or actions of another doctor, even when blatantly wrong. There badly needs to be an independent patient advocacy and dispute resolution that is aligned with the interests of the patient, not the doctors.

tdrp 6y ago
For the same exact issue, you can go to a cardio and get prescribed some cardio-related medication, go to a neuro and get prescribed neuro-related medication, etc. To a hammer everything is a nail. I was put on antibiotics, beta blockers, topamax and a couple of more serious medication for what was ultimately just a vitamin D deficiency that they had been too narrow-sighted to try catching. I lost a lot of respect for the medical profession at that time.

tdrp 6y ago

Here is my story. A few years after coming to the US I started developing some neurological symptoms: confusion, dizziness, lightheadedness. 1. The GP first blamed it on dehydration and sent me home and told me to drink plenty of water. Went back a week later and she prescribed antibiotics thinking it was some kind of infection somewhere. "Let's just try the strongest antibiotics and see". I did the full course despite some non-trivial side effects and was still not better, but at that point my heartbeat had gotten a bit faster from the whole situation so I was referred to a cardio. 2. Seeing a fast heartbeat, the cardiologist put me, a 24-year old at the time, on beta blockers. Two weeks later, still no improvement. 3. So I was referred to a neurologist. Did a brain MRI, did not find anything so he assumed it was some kind of epilepsy/migraine combo and put me on something called topamax. Mind you, all these prescriptions were given to me within 10-15 minutes of seeing those doctors. Topamax had its own side effects and my health at that point had spiraled out of control. Reported the side effects to the neuro and he thought he'd give me one more medication to counter the other medication's side effects. When I went back to the GP they said the whole thing was probably caused by "stress". 4. I just stopped all medication, got sick leave from my job, and went back to my home country for a couple of months. I asked my old family doctor to just do a general check-up and see if anything was up. Within weeks my situation had magically started to improve. Turned out my vitamin D levels were at 7 (forgot the unit, but the minimum was like 30). None of the doctors thought about it, every doctor had arrogantly assumed that the problem could only be from their own field (neuro assumed it was neurological, cardio assumed it was cardiac), and literally none of them put the slightest amount of effort into looking at the whole picture. This was in one of the most affluent areas and those were supposedly some of the "good" doctors. I am still convinced that a machine trained model would have performed significantly better than these people since they were literally like bots following a rule book. Side corollary, if you are from a sunny country and move to a state or country in Northern latitudes, keep in mind that vitamin D deficiency can slowly creep on you and basically turn you into a moron. This should be a PSA.

medntech 6y ago
How do you know it was low vitamin D causing your symptoms?

Fezzik 6y ago

Similar story: I went to the doctor with sharp hip pain a few years back, aged 32, relatively fit (running 5 miles every workday and swimming 1+ mile most days), but the hip pain was getting worse by the day. I was referred to a surgeon who wanted to re-route tendons or ligaments in my hips. It made no sense to me. I realized, with a little reflection, that I had been wearing heeled dress shoes far more than I normally did. I started wearing zero-drop shoes and the pain went away in a few days. Neither the GP nor the surgeon did any digging about possible causes.

tdrp 6y ago
Dealing with some specialists feels like dealing with automated bots. They almost sound like they follow a script down to the letter. If A then prescribe B, then C. And almost never look at the big picture. And every symptom that happens they tend to shoehorn into their own specialization, and not realize that it might be an indication that the problem lies elsewhere.
- lhuser123 6y ago
  And after a few minutes they start signaling that the conversation is about to end.
- phobosanomaly 6y ago
  In medicine there is a lot of emphasis placed behind evidence-based approaches. The alternative is an experience-based approach (the more fluid approach you're describing). The problem with experience-based approaches are that they're hard to evaluate since it's impossible to standardize, and they may open the provider up to risk of litigation. As a result, an evidence-based mindset may result in the algorithmic behavior you describe. We don't have a good codified way to standardize the practitioner's balance between evidence-based and experience-based, so it's a bit up in the air right now. Medicine is really, really hard to do well. Love to hear from anyone with a different take.
  - alexvoda 6y ago
    This is going to sound harsh but I feel it is true and inevitable. If you are not using an experience-based approach you are not doing your job. People seek doctors precisely because they are supposed to have experience. Medical school is many years long precisely so you can build that experience. If you just execute algorithms based on evidence you are a prime target for automation. Those in my profession (software) will automate your role away and do it better and faster and more available and more reliable. Because you make it easy for us. We may be cursed to solve only 80% of any problem but if you solve even less, we still end up ahead. My point, all of the interest and investment in AI diagnosis (IBM Watson comes to mind, but the field is decades old) is caused precisely by the poor practices in the medical field. It is of course naive to think we will solve medicine with software. But we only need to be better than average just like self driving cars are not aming to be perfect, just better than average. Be a HUMAN doctor and we will need AGI to replace you. Be a robot and you will be replaced by an actual robot. (note: I do not believe technology is the solution here. I am just a bit pissed after a doctor prescribed stuff without even touching or looking at an acquaintance.)

bionhoward 6y ago

The whole idea of diagnosis as a point estimate is inherently flawed. The deliverable for a diagnostician ought to be a distribution over diagnoses. Duh. Learn 2 probability, docs