4 ms·

It takes an average of 4-5 years to initially diagnose autoimmune diseases. https://nationalhealthcouncil.org/blog/a-major-health-crisis-the-alarming-rise-of-a

It takes an average of 4-5 years to initially diagnose autoimmune diseases. https://nationalhealthcouncil.org/blog/a-major-health-crisis-the-alarming-rise-of-autoimmune-disease/ https://nationalhealthcouncil.org/blog/a-major-health-crisis... When my first symptoms appeared, I initially thought it was just aging, despite being a healthy 28-year-old man who enjoyed exercise and maintained a proper diet. I noticed health issues arising even though I took better care of my exercise, diet, and sleep compared to my friends. Hospitals provide fragmented information across departments, which can extend the diagnosis period for rare conditions. I believe medical services can be delivered through personal medical data + medical domain knowledge + intelligence (excluding physical intervention). AI can process more data than doctors have time to review, contains more knowledge than one person can study, and its intelligence will continue to improve. This gives me hope, and I want to help others who could benefit from this hope.

IAmGraydon 2y ago
I may have missed it, but what autoimmune disease were you diagnosed with? It seems rather odd that you wouldn't mention it.
sarchertech 2y ago
>AI can process more data than doctors have time to review, contains more knowledge than one person can study, and its intelligence will continue to improve. The key part of that statement is "continue to improve" we have no way of knowing where we are on the sigmoid curve of improvement. But right now. Today. Tools like this that spit out "you might have an autoimmune disease" aren't helping. Until they improve dramatically, the most likely outcome is that doctors get even more overwhelmed with people who think they have an auto immune disorder, but don't.
- tempaccount420 2y ago
  I think a lot of people have lost trust in doctors. You need to do your own research if you want to get the best treatment (especially when dealing with dentists). I don't think it's unreasonable to use AI as part of that research.
  - awkwardpotato 2y ago
    [flagged]
    - sarchertech 2y ago
      I mean a lot of people have lost trust in doctors, but then again a lot of people have decided that vaccines are created by Bill Gates to mind control them.
      - codr7 2y ago
        [flagged]
        spoaceman7777 2y ago
        Very true. My guinea worm used to tap out a valid Windows product registration key in morse code on demand. Then Bill went and shut him up :(
        codr7 2y ago
        You still can't see it, can you? Africa is where all the resources are, we just have to get rid of all the pesky people standing in the way.
    - deleted 2y ago
      [deleted]
    - adamredwoods 2y ago
      I think there is a movement against science, largely from the COVID epidemic, but I would like to see numbers. I also believe for science, there are a lot of bad actors out on the internet publishing inaccurate information (ivermectin, flat earth, etc).
  - sarchertech 2y ago
    People are really bad at doing their own research and diagnosing themselves. I'm much more medically knowledgeable than the average person. I'm reasonably smart, and interested in the subject. And then I married a doctor. But even given all of those things, I'm very bad a diagnosing myself. I once swore that I had Giardia. I read dozens of papers and case studies. A close family member of mine was also having some similar GI symptoms at the time, and I even calculated the probability that our symptoms were independent. After that was ruled out from testing and I kept having stomach pain, I did more research. I was pretty sure I had stomach cancer. Eventually I got scoped--gastritis. Took a PPI for a little bit and it cleared right up. Gastritis wasn't even something that I had considered. It showed up in my search results, but because it wasn't a serious problem, I didn't focus on it.
- makehistory 2y ago
  This has a simple benefit: There are cases where better quality medical services can be received with less cost (time and money).
  - moralestapia 2y ago
    Why would this be downvoted? This is 100% true. The medical shills are working hard on this thread.
- vonneumannstan 2y ago
  >The key part of that statement is "continue to improve" we have no way of knowing where we are on the sigmoid curve of improvement. Such a tired take. What we do know is we are not on the flattening part and literally every company working on these technologies is saying there is no end in sight.
  - sarchertech 2y ago
    >literally every company working on these technologies is saying there is no end in sight. Literally every company making money selling Foobars is saying there's no end in sight selling Foobars?
  - malcolmgreaves 2y ago
    Indeed, it’s tiring to have to keep correcting uneducated AI bros. Such is the consequences of unchecked capitalism finding a new shiny toy that it wants to suck the value out of.
  - sensanaty 2y ago
    The people currently enjoying a bajillion dollars of investor funding say the tool making them a bajillion dollars has no end in sight, you don't say...
    - vonneumannstan 2y ago
      If you've got evidence the curves are flattening lets all see it. Otherwise it actually does make sense to update when everyone at these companies tells you they aren't flattening and might even be bending upward.
- dylan604 2y ago
  > Tools like this that spit out WebMD has been like this well before current iterations of LLMs. Pretty much any symptom you looked up would very meme-like say "it could be cancer". Only, it wasn't trying to be a meme. I always saw it more of a CYA on webMD's part though, without trying to sound authoritative like LLMs do.
  - Angostura 2y ago
    You might enjoy the opening of the comic novel Three Men In A Boat, where the narrator reads a medical dictionary and finds he is suffering from every malady listed apart from- much to his annoyance- housemaid’s knee. https://gutenberg.org/files/308/308-h/308-h.htm https://gutenberg.org/files/308/308-h/308-h.htm Published 1889
    - gopalv 2y ago
      The doctor's prescription is probably applicable even to this day. Food, bitter beer, exercise, early bedtimes and "stop stuffing your head with things you don't understand". > I followed the directions, with the happy result—speaking for myself—that my life was preserved, and is still going on. I read the book as part of my English - II in school, but no part stuck to me as much as the Liver cure for children.
- thelittleone 2y ago
  I've witnessed 4 medical emergencies, with 3 being life-threatening. Each case at different hospitals, and each incorrectly diagnosed. The most dramatic was in 2009. My wife was admitted to emergency at 22 weeks pregnant with severe cramping, nausea, and severe IBS like symptoms. She couldn't keep food down, leading to daily stomach pumping and eventually IV nutrition. The episodes started every few days but grew more intense and frequent. After 8 days, the first doctor seemed lost. When I asked about a second opinion, he lectured me that it was "his call to make, not mine." That killed any trust - I asked him not to return. The next doctor, an eccentric but brilliant GI specialist, ordered new tests. I obsessively googled every result (partly to cope, partly to help). When he suggested a motility drug, my research found a case of spontaneous abortion linked to it. We declined. Three weeks in, I noticed something odd in her lab work - different blood counts from different locations. More late-night googling led me to placental percreta, where the placenta grows through the uterus and attaches to other organs. Several ultrasounds proved inconclusive. With daily episodes now and my wife deteriorating, we insisted on an emergency C-section despite warnings about our baby's lung development. During the procedure, even with an epidural, she went into extreme pain. Her eyes rolled back, the surgical team's demeanor changed instantly, and I was told to leave the OR. Waiting outside for who knows how long. I knew the risks. Some noise down the hallway, a few nurses called me over. They were wheeling a humidicrib down the hall to the ICU. Little champs whole leg was no longer than my pinky finger. They took him into the ICU and sent me to the hospital room to wait. The OB arrived an hour or so later and explained she was alive and they had to remove something. He took out a photo and and showed how the placenta had indeed broken through her uterus and attached to the intestine. He then pointed to a particular point and explained how it would have ruptured at any moment. The decision to push for the C-section likely saved both lives. Our son, never developed lung issues. Lots of luck. This experience showed me how even amazing doctors, overwhelmed with cases and data, can miss crucial connections. In 2009, they didn't have the tools to correlate data the way I could with google search-fu. AI diagnosis tools will save lives - they can make these connections faster and more reliably than either doctors or desperate husbands with search engines. And it will just improve over time.
  - s1artibartfast 2y ago
    Terrifying story and example. Im glad it worked out and I think there are a number of factors that this illustrates. One is the time and incentive differential between doctors and the patient. Im guessing you and your wife spent multiple magnitudes of order more time trying to get to find a cause. You have one wife and one unborn child, while doctors have dozens of patients a day. A doctor can never devote as much time and emotion as a patient. This isn't a condemnation, but a statement about reality. Medical training and experience can reduce the impact, but not overcome it. It is a reason why someone can't entirely outsource their heath to the medical system, and something that I think people miss when they set medical expectations. From the perspective of the medical system, it is a numbers game, where the optimal number of deaths is non-zero. More time and effort spent in one area means less in another. Saving one life might cost two others. Because of this, I think it is most useful to discuss ways to increase medical efficiency. Better data transfer, better collation, better processes. AI/big data review has a place in this, but we should be aware of it's limitations, particularly on the data it doesn't capture.
- cameldrv 2y ago
  I don't know about autoimmune diseases, but I had someone I care about that had a rare (1/50,000) bone disease recently that Claude was able to successfully diagnose, suggest appropriate labwork, and give treatment and prognosis information for. I was seriously impressed. The doctors eventually arrived at the same conclusion, but it was multiple specialists and it took them weeks.
deleted 2y ago
[deleted]
moralestapia 2y ago
I agree with you. And I have also been having health issues for years and doctors cannot really find what's going on. You know what's worse? They don't even care to find what's going on, they pay very little attention to me and just send me out with the same medication they give to everybody because they get 5 dollars for each patient that buys it. I cannot wait for many of them to be replaced by AI, it will be an improvement over the status quo. Do you know how many times I've got prescribed a drug that would harm me more than do good? Do you know how many times I've got prescribed an antibiotic I'm allergic to, even after telling them I'm allergic to it, even after three different people wrote that down in many different places? Most modern doctors are criminals and I will never be ashamed to say that, because it's true. Please keep doing what you're doing and ignore the naysayers, they're usually on some pharma's company payroll, sad.
- itchyouch 2y ago
  Curious if you've tried any harder core dietary interventions?
  - moralestapia 2y ago
    I eat pretty much everything, in a healthy way. But it could be something I eat, definitely, what I have feels like a sudden allergy to something that I haven't been able to single out from the environment.
- sarchertech 2y ago
  >because they get 5 dollars for each patient that buys it You probably won't believe it, but that's not a thing. My wife is a doctor and I can tell you exactly how she gets paid. The only real misaligned incentive I've been able to find is that she could pad her paycheck by spending more ordering tests. But she her pet peeve is doctors ordering tests that aren't going to change the course of treatment, so she's definitely not going to do that.
throwaway5752 2y ago
Do you have any data for how much time is spend running tests and exams on people without autoimmune conditions? That might impact autoimmune diagnostic timelines. Anecdotally, I have heard that hypochondria is a problem in this space. So I would want to know the ratio of incorrect self-diagnosis to confirmed diagnosis, and what percentage of the system's totally human and technical resources are spent recognizing false positives. I think that this sort of effort is probably a positive one. Patients should have access to their records are are more likely to be able to centralize data for analysis by a 3rd party - with all the attendant risks - more effectively than any other party. Secure systems without conflicts of interest - ie, insurance companies - to aid multidisciplinary diagnoses over longer time frames is a good thing. But the risk of AI hallucinations and doctor/diagnosis shopping are real. This post was light on details on the diagnosis, how many rheumatologists they saw to get it, what tests confirmed it, and if the treatment has been effective in a way that cannot be skewed (https://pubmed.ncbi.nlm.nih.gov/30139289/ https://pubmed.ncbi.nlm.nih.gov/30139289/)
- nradov 2y ago
  That depends on how you define confirmed diagnosis and false positives. For a lot of autoimmune conditions there's no real solid diagnostic criteria. Like the patient has a variety of symptoms which could indicate a few different conditions. The doctor suspects it might be lupus so treats for that and the patient's symptoms seem to improve. Does that mean the patient should now have a confirmed lupus diagnosis? Hard to say.
- itchyouch 2y ago
  I don't think hypochondria is the problem as much as there is a degradation in the overall health of the population and they do feel unwell, but the system is unable to diagnose them because they aren't "bad" by any quantitative standards medicine operates on (ie bloodwork/weight/etc being off). It's like how the tech world did not notice or address "the website is slow" in the 90s until folks started writing about how the 95th, 98th, 99th, 99.9th percentile times affected user experience. Once we could link 95th percentile page latency to revenue/profit, all of a sudden, investing in performance became a priority. I'm not sure that we have managed to link and make a case of linking GDP (or some other metric) to overall health of the population at the fringes.

IAmGraydon 2y ago

I may have missed it, but what autoimmune disease were you diagnosed with? It seems rather odd that you wouldn't mention it.

sarchertech 2y ago

>AI can process more data than doctors have time to review, contains more knowledge than one person can study, and its intelligence will continue to improve. The key part of that statement is "continue to improve" we have no way of knowing where we are on the sigmoid curve of improvement. But right now. Today. Tools like this that spit out "you might have an autoimmune disease" aren't helping. Until they improve dramatically, the most likely outcome is that doctors get even more overwhelmed with people who think they have an auto immune disorder, but don't.

tempaccount420 2y ago
I think a lot of people have lost trust in doctors. You need to do your own research if you want to get the best treatment (especially when dealing with dentists). I don't think it's unreasonable to use AI as part of that research.
- awkwardpotato 2y ago
  [flagged]
  - sarchertech 2y ago
    I mean a lot of people have lost trust in doctors, but then again a lot of people have decided that vaccines are created by Bill Gates to mind control them.
    - codr7 2y ago
      [flagged]
      - spoaceman7777 2y ago
        Very true. My guinea worm used to tap out a valid Windows product registration key in morse code on demand. Then Bill went and shut him up :(
        codr7 2y ago
        You still can't see it, can you? Africa is where all the resources are, we just have to get rid of all the pesky people standing in the way.
  - deleted 2y ago
    [deleted]
  - adamredwoods 2y ago
    I think there is a movement against science, largely from the COVID epidemic, but I would like to see numbers. I also believe for science, there are a lot of bad actors out on the internet publishing inaccurate information (ivermectin, flat earth, etc).
- sarchertech 2y ago
  People are really bad at doing their own research and diagnosing themselves. I'm much more medically knowledgeable than the average person. I'm reasonably smart, and interested in the subject. And then I married a doctor. But even given all of those things, I'm very bad a diagnosing myself. I once swore that I had Giardia. I read dozens of papers and case studies. A close family member of mine was also having some similar GI symptoms at the time, and I even calculated the probability that our symptoms were independent. After that was ruled out from testing and I kept having stomach pain, I did more research. I was pretty sure I had stomach cancer. Eventually I got scoped--gastritis. Took a PPI for a little bit and it cleared right up. Gastritis wasn't even something that I had considered. It showed up in my search results, but because it wasn't a serious problem, I didn't focus on it.
makehistory 2y ago
This has a simple benefit: There are cases where better quality medical services can be received with less cost (time and money).
- moralestapia 2y ago
  Why would this be downvoted? This is 100% true. The medical shills are working hard on this thread.
vonneumannstan 2y ago
>The key part of that statement is "continue to improve" we have no way of knowing where we are on the sigmoid curve of improvement. Such a tired take. What we do know is we are not on the flattening part and literally every company working on these technologies is saying there is no end in sight.
- sarchertech 2y ago
  >literally every company working on these technologies is saying there is no end in sight. Literally every company making money selling Foobars is saying there's no end in sight selling Foobars?
- malcolmgreaves 2y ago
  Indeed, it’s tiring to have to keep correcting uneducated AI bros. Such is the consequences of unchecked capitalism finding a new shiny toy that it wants to suck the value out of.
- sensanaty 2y ago
  The people currently enjoying a bajillion dollars of investor funding say the tool making them a bajillion dollars has no end in sight, you don't say...
  - vonneumannstan 2y ago
    If you've got evidence the curves are flattening lets all see it. Otherwise it actually does make sense to update when everyone at these companies tells you they aren't flattening and might even be bending upward.
dylan604 2y ago
> Tools like this that spit out WebMD has been like this well before current iterations of LLMs. Pretty much any symptom you looked up would very meme-like say "it could be cancer". Only, it wasn't trying to be a meme. I always saw it more of a CYA on webMD's part though, without trying to sound authoritative like LLMs do.
- Angostura 2y ago
  You might enjoy the opening of the comic novel Three Men In A Boat, where the narrator reads a medical dictionary and finds he is suffering from every malady listed apart from- much to his annoyance- housemaid’s knee. https://gutenberg.org/files/308/308-h/308-h.htm https://gutenberg.org/files/308/308-h/308-h.htm Published 1889
  - gopalv 2y ago
    The doctor's prescription is probably applicable even to this day. Food, bitter beer, exercise, early bedtimes and "stop stuffing your head with things you don't understand". > I followed the directions, with the happy result—speaking for myself—that my life was preserved, and is still going on. I read the book as part of my English - II in school, but no part stuck to me as much as the Liver cure for children.
thelittleone 2y ago
I've witnessed 4 medical emergencies, with 3 being life-threatening. Each case at different hospitals, and each incorrectly diagnosed. The most dramatic was in 2009. My wife was admitted to emergency at 22 weeks pregnant with severe cramping, nausea, and severe IBS like symptoms. She couldn't keep food down, leading to daily stomach pumping and eventually IV nutrition. The episodes started every few days but grew more intense and frequent. After 8 days, the first doctor seemed lost. When I asked about a second opinion, he lectured me that it was "his call to make, not mine." That killed any trust - I asked him not to return. The next doctor, an eccentric but brilliant GI specialist, ordered new tests. I obsessively googled every result (partly to cope, partly to help). When he suggested a motility drug, my research found a case of spontaneous abortion linked to it. We declined. Three weeks in, I noticed something odd in her lab work - different blood counts from different locations. More late-night googling led me to placental percreta, where the placenta grows through the uterus and attaches to other organs. Several ultrasounds proved inconclusive. With daily episodes now and my wife deteriorating, we insisted on an emergency C-section despite warnings about our baby's lung development. During the procedure, even with an epidural, she went into extreme pain. Her eyes rolled back, the surgical team's demeanor changed instantly, and I was told to leave the OR. Waiting outside for who knows how long. I knew the risks. Some noise down the hallway, a few nurses called me over. They were wheeling a humidicrib down the hall to the ICU. Little champs whole leg was no longer than my pinky finger. They took him into the ICU and sent me to the hospital room to wait. The OB arrived an hour or so later and explained she was alive and they had to remove something. He took out a photo and and showed how the placenta had indeed broken through her uterus and attached to the intestine. He then pointed to a particular point and explained how it would have ruptured at any moment. The decision to push for the C-section likely saved both lives. Our son, never developed lung issues. Lots of luck. This experience showed me how even amazing doctors, overwhelmed with cases and data, can miss crucial connections. In 2009, they didn't have the tools to correlate data the way I could with google search-fu. AI diagnosis tools will save lives - they can make these connections faster and more reliably than either doctors or desperate husbands with search engines. And it will just improve over time.
- s1artibartfast 2y ago
  Terrifying story and example. Im glad it worked out and I think there are a number of factors that this illustrates. One is the time and incentive differential between doctors and the patient. Im guessing you and your wife spent multiple magnitudes of order more time trying to get to find a cause. You have one wife and one unborn child, while doctors have dozens of patients a day. A doctor can never devote as much time and emotion as a patient. This isn't a condemnation, but a statement about reality. Medical training and experience can reduce the impact, but not overcome it. It is a reason why someone can't entirely outsource their heath to the medical system, and something that I think people miss when they set medical expectations. From the perspective of the medical system, it is a numbers game, where the optimal number of deaths is non-zero. More time and effort spent in one area means less in another. Saving one life might cost two others. Because of this, I think it is most useful to discuss ways to increase medical efficiency. Better data transfer, better collation, better processes. AI/big data review has a place in this, but we should be aware of it's limitations, particularly on the data it doesn't capture.
cameldrv 2y ago
I don't know about autoimmune diseases, but I had someone I care about that had a rare (1/50,000) bone disease recently that Claude was able to successfully diagnose, suggest appropriate labwork, and give treatment and prognosis information for. I was seriously impressed. The doctors eventually arrived at the same conclusion, but it was multiple specialists and it took them weeks.

deleted 2y ago

[deleted]

moralestapia 2y ago

I agree with you. And I have also been having health issues for years and doctors cannot really find what's going on. You know what's worse? They don't even care to find what's going on, they pay very little attention to me and just send me out with the same medication they give to everybody because they get 5 dollars for each patient that buys it. I cannot wait for many of them to be replaced by AI, it will be an improvement over the status quo. Do you know how many times I've got prescribed a drug that would harm me more than do good? Do you know how many times I've got prescribed an antibiotic I'm allergic to, even after telling them I'm allergic to it, even after three different people wrote that down in many different places? Most modern doctors are criminals and I will never be ashamed to say that, because it's true. Please keep doing what you're doing and ignore the naysayers, they're usually on some pharma's company payroll, sad.

itchyouch 2y ago
Curious if you've tried any harder core dietary interventions?
- moralestapia 2y ago
  I eat pretty much everything, in a healthy way. But it could be something I eat, definitely, what I have feels like a sudden allergy to something that I haven't been able to single out from the environment.
sarchertech 2y ago
>because they get 5 dollars for each patient that buys it You probably won't believe it, but that's not a thing. My wife is a doctor and I can tell you exactly how she gets paid. The only real misaligned incentive I've been able to find is that she could pad her paycheck by spending more ordering tests. But she her pet peeve is doctors ordering tests that aren't going to change the course of treatment, so she's definitely not going to do that.

throwaway5752 2y ago

Do you have any data for how much time is spend running tests and exams on people without autoimmune conditions? That might impact autoimmune diagnostic timelines. Anecdotally, I have heard that hypochondria is a problem in this space. So I would want to know the ratio of incorrect self-diagnosis to confirmed diagnosis, and what percentage of the system's totally human and technical resources are spent recognizing false positives. I think that this sort of effort is probably a positive one. Patients should have access to their records are are more likely to be able to centralize data for analysis by a 3rd party - with all the attendant risks - more effectively than any other party. Secure systems without conflicts of interest - ie, insurance companies - to aid multidisciplinary diagnoses over longer time frames is a good thing. But the risk of AI hallucinations and doctor/diagnosis shopping are real. This post was light on details on the diagnosis, how many rheumatologists they saw to get it, what tests confirmed it, and if the treatment has been effective in a way that cannot be skewed (https://pubmed.ncbi.nlm.nih.gov/30139289/ https://pubmed.ncbi.nlm.nih.gov/30139289/)

nradov 2y ago
That depends on how you define confirmed diagnosis and false positives. For a lot of autoimmune conditions there's no real solid diagnostic criteria. Like the patient has a variety of symptoms which could indicate a few different conditions. The doctor suspects it might be lupus so treats for that and the patient's symptoms seem to improve. Does that mean the patient should now have a confirmed lupus diagnosis? Hard to say.
itchyouch 2y ago
I don't think hypochondria is the problem as much as there is a degradation in the overall health of the population and they do feel unwell, but the system is unable to diagnose them because they aren't "bad" by any quantitative standards medicine operates on (ie bloodwork/weight/etc being off). It's like how the tech world did not notice or address "the website is slow" in the 90s until folks started writing about how the 95th, 98th, 99th, 99.9th percentile times affected user experience. Once we could link 95th percentile page latency to revenue/profit, all of a sudden, investing in performance became a priority. I'm not sure that we have managed to link and make a case of linking GDP (or some other metric) to overall health of the population at the fringes.