7 ms·

>For 5 years, I struggled with mysterious symptoms - getting injured easily during workouts, slow recovery, random fatigue, joint pain. Those symptoms could be

>For 5 years, I struggled with mysterious symptoms - getting injured easily during workouts, slow recovery, random fatigue, joint pain. Those symptoms could be caused by almost anything. In the end the author says they "likely have an autoimmune disorder". To be honest just from that list of symptoms, my first guess would be aging. I really don't buy that this person's AI tool did anything here. I think they probably got lucky even assuming the "autoimmune disorder" is the actual cause of these symptoms. > I spent over $100k visiting more than 30 hospitals and specialists, trying everything from standard treatments to experimental protocols at longevity clinics I get it that this sucks. But when you have a list of vague symptoms that aren't very serious, could be caused by anything, and your records show 30 visits to hospitals and specialists, and you start talking about experimental life extension treatments, the vast majority of doctors are going to write you off almost immediately as a hypochondriac. It's the same in any profession. I worked at Geek Squad during college. Someone comes in 30 times because "my computers feels a little slow", we've ran every test we can think of, and nothing is wrong. In that case I'm going to place the blame on either user perception--this specific customer has unreasonable expectations about what is slow and fast. Or there's a minor non-serious issue with his computer that no one is likely to be able to diagnose without doing something seriously invasive that is likely to cause more harm than the issue.

ANighRaisin 2y ago
> It wasn't until I visited a rheumatologist who looked at the combination of my symptoms and genetic test results that I learned I likely had an autoimmune condition AI didn't actually give the initial possibility of having an autoimmune disease.
- yieldcrv 2y ago
  The next paragraph says the AI gave that answer before the rheumatologist visit So it’s functioning as a second opinion
- Aurornis 2y ago
  > that I learned I likely had an autoimmune condition “Likely” had? I read your post and comments last week when you copied it across a lot of subreddits, but I feel like the specific details of your story are still changing. I understand you want to promote your side project, but the way you’re vaguely promoting it as having solved a medical mystery is playing a dangerous game with people who are desperate to hear answers from your tool.
pjc50 2y ago
I can see both sides of this, because while I've had similar tech support experiences I also know a lot of people who've had long experiences trying to get chronic health conditions understood or even acknowledged. Any kind of chronic pain condition is bad for this, but endometriosis seems to be particularly bad. Also ME/CFS and related things like MCAS. I don't really know what the answer is. If AI systems are going to be used to deny people coverage (and they will be), why shouldn't patients have AI of their own? On the other hand, there's plenty of examples of AI giving out completely wrong advice, and it may be difficult for doctors to get them to accept that. Not to mention entire politicised subcultures are already built around medical misinformation.
- sarchertech 2y ago
  It sucks being the individual in this process. The only real solution is to develop better models for understanding what's going on so that we can come up with objective criteria and testing. To an external observer, there is no difference between someone who has a very low pain threshold and experiences normal body wear as extremely painful, and someone who has some mechanical condition causing pain. > but endometriosis seems to be particularly bad. I've known people who had endometriosis successfully treated after a long struggle to get someone to believe them. And I've known someone who after a long struggle to convince someone to believe them, finally found someone. Then underwent extremely invasive and expensive surgery with no improvements. It's an extremely difficult issue and it sucks for everyone involved.
someothherguyy 2y ago
> It's the same in any profession. I worked at Geek Squad during college. Someone comes in 30 times because "my computers feels a little slow", we've ran every test we can think of, and nothing is wrong. In that case I'm going to place the blame on either user perception--this specific customer has unreasonable expectations about what is slow and fast. Or there's a minor non-serious issue with his computer that no one is likely to be able to diagnose without doing something seriously invasive that is likely to cause more harm than the issue. I would hope a medical professional has some baselines to compare against unlike your methodology at Geek Squad. You could have ran benchmarks, found a machine with identical hardware, etc. IMO, in both of these cases (medical and geek squad) there are issues with diagnostic methodology.
- sarchertech 2y ago
  >You could have ran benchmarks, found a machine with identical hardware, etc. 1. In similar cases I couldn't find a machine with identical hardware to a 5 year old computer without spending way more money than this was worth. Even if I did the only way to get an accurate comparison would be to wipe both machine and install an OS from scratch so that they are running the same software--the customer doesn't want us to do such an invasive procedure. Extrapolate both of those problems to actual humans and you'll see the issues here. 2. Almost all of his complaints are subjective and impossible to objectively measure. We have no way to objectively measure things like feeling fatigue and pain.
  - someothherguyy 2y ago
    I didn't mean to trigger a defense, but I don't think you are considering all the possibilities. > Even if I did the only way to get an accurate comparison would be to wipe both machine and install an OS from scratch so that they are running the same software--the customer doesn't want us to do such an invasive procedure. You don't need to do any of that if you run benchmarks against averages. For example, PassMark or Geekbench are decent tools for assessing expected performance.
    - sarchertech 2y ago
jimnotgym 2y ago
Also, the person was able to submit the test results from the 30 visits into the AI model... I fed into ChatGPT my similar symptoms and test results and it came up with a variety of diseases that I, after further testing, don't have.
makehistory 2y ago
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.
deleted 2y ago
[deleted]
tasty_freeze 2y ago
My wife had EDS (Ehlers Danlos Syndrome), a genetic condition that results in malformed collagen -- it is too stretchy. She wasn't diagnosed until she was 35, even though in retrospect the symptoms were obvious. She had five knee surgeries, starting at age 20, to address instability and knee pain that were not caused by any injury (nor has she ever been overweight), just standing and walking like an average person. She has no foot arch, bruises very easily, has velvety soft skin, has an unusually high arch in the roof of her mouth, and has POTS (postural orthostatic tachycardia syndrome). These are all common hallmarks of EDS, but no doctor connected the dots until the 5th surgery. BTW, none of the surgeries helped and in fact made things worse.
- nonchalantsui 2y ago
  Just wanted to add that often times these stories of doctors not taking patients seriously (when eventually they do get diagnosed with something serious) involves women because of how vastly substandard medical testing and research is for women. A lot of men won’t have that same experience, they’ll have the experience of waiting too long to ask for help. Which in a dark ironic manner is one way of keeping things equal, one won’t be taken seriously for 5 years, the other won’t ask for help for 5 years!
  - shermantanktop 2y ago
    Trust me, men can have the same experience. For whatever reason, these difficult-to-diagnose conditions affect women more, but the experience of being shunted around, given inappropriate treatment, being referred to PT as a way to get rid of the patient, it all happens to men too. I’ve concluded that most doctors are highly credentialed decision trees, they all start at the top of the tree no matter your history, and if they hit a dead end you’re going to told you are the problem, directly or indirectly.
  - rayalez 2y ago
    As a guy struggling with a confusing health issue for close to a decade, and having the exact same experience, I'll ask you to keep your stereotypes to yourself. It's weird how people who complain about inequality and lack of empathy towards one group, are completely incapable or unwilling to offer any of that to other people.
RockRobotRock 2y ago
I get the sentiment of what you're saying, but being dismissive about someone's health concerns is cruel. If anything, it's a bit sad that this person felt so let down by their healthcare system that they decided to build software that glues their EMR and LLMs together (maybe that was therapeutic in and of itself)
Aurornis 2y ago
> I really don't buy that this person's AI tool did anything here. The author fed their medical records to the tool and then, as far as I can tell, the tool included autoimmune disease as a possible explanation. Every comment that I saw asking for clarification received a vague response. The closest I can see is that the LLM and rheumatologist both proposed “an autoimmune condition” around a similar time, though the answer about which came first is also unclear. The catch is that for the author to even have a rheumatologist referral to begin with, some previous combination of directors would have had to have suspected an autoimmune possibility and created some documentation to that effect. Those documents were supposedly fed into the tool, which obviously would have surfaced some of the data and possibilities that led to a rheumatologist referral. So I agree. The way this tool is being presented as diagnosing a mystery illness by itself feels very misleading. I saw this spammed across multiple subreddits last week when the author was trying to promote it. I think maybe they set out trying to get attention on their AI side project on their GitHub profile, but got a little carried away with the angle that it was diagnosing medical mysteries.
- ckcheng 2y ago
  > to even have a rheumatologist referral to begin with, some previous combination of [doctors] would have had to have suspected an autoimmune possibility and created some documentation to that effect This is a good point. Even when a diagnosis is obvious, a doctor may not say it outright and instead make a referral to a specialist because it’s not their specialty to diagnose that condition. This is a good thing because they’re not that specialist so they could be wrong about it, and if they are right, then they should make that referral anyway - and end result is the same i.e. a referral.
- pogue 2y ago
  I don't see the harm in something like this. If you were to train your own LLM specifically on medicine & medical data, then show it your lifetime history of doctors visits, blood work, what drugs you're taking, have taken, symptoms and etc etc etc there's a decent probability it could give some perspective you might not be able to get elsewhere - especially in the broken US healthcare system. Having access to multiple specialists in many different fields is something a large % of the population simply doesn't have access to for a variety of reasons. I think the issue is people might assume it's going to spit out your exact diagnosis 100% of the time right off the bat. That's obviously not true, but that's not what I got from reading the description of the project. It sounds more like a potential useful tool for folks to have as an additional option, and then to bring that information to a doctor to see if it pans out. Regardless, one extremely helpful thing I got out of reading the reddit thread was the mention of an unrelated project called Fasten, which will apparently allow you to request all your medical records from many sources and then self host them: Fasten is an open-source, self-hosted, personal/family electronic medical record aggregator, designed to integrate with 100,000's of insurances/hospitals/clinics https://github.com/fastenhealth/fasten-onprem https://github.com/fastenhealth/fasten-onprem
lr4444lr 2y ago
It's even worse than that. Having various lab panels outside of the reference range can be perfectly normal temporal variation and not indicative of anything wrong unless it is very extreme. Good doctors treat a patient, not a number. This doesn't mean I'm dismissing AI for diagnostics outright, but multiple good doctors have confirmed to me that many auto-immune diseases are fiendishly hard to diagnose as diseases in and of themselves vs. inflammation downstream from some other condition. The main problem isn't medical incompetence or apathy.
jacksnipe 2y ago
10 years ago the NLP lab I was working in was trying to build a system like this for autoimmune disorders partnered with a hospital. Autoimmune diagnosis is broken, and it IS a systems problem. The hospital system itself incentivizes compartmentalization of your different body systems to different specialists, because it allows the hospital to do less central planning and smoothes out the financial side of things (e.g. which departments do we invest in next year).
vjk800 2y ago
I don't know if I can even blame the doctors for that. I mean, for a list of very generic and vague symptoms like that, there are probably thousands of viable diagnoses. Running every possible test to catch some rare disease every time someone comes in complaining that they "feel fatigued" would be completely unfeasible. Even if the cause is found, for many diseases the treatment is just "eat healthy and exercise". People think medicine is like fixing bugs in a code. Just a lot of tests, eventually a single cause is found, a pill is taken and the person is fixed. Reality seems to be closer to this: as you age, you accumulate damage everywhere. Eventually this damage is going to kill you, but before that it just makes you a bit slower and more tired. Sometimes, if you're lucky, some of this damage can be reversed, but mostly not.
lemming 2y ago
But when you have a list of vague symptoms that aren't very serious, could be caused by anything, and your records show 30 visits to hospitals and specialists, and you start talking about experimental life extension treatments, the vast majority of doctors are going to write you off almost immediately as a hypochondriac. Tell me you don't know anyone with an autoimmune disease, without telling me you don't know anyone with an autoimmune disease! This is exactly the experience of a lot of people, my wife included. It took years to finally get a diagnosis, partly because it took her a long time to convince herself that it wasn't all in her head (much of which was due to gaslighting and general incompetence of doctors), and then once she was convinced she had a problem, finding a doctor who would actually take her seriously was a total mission. There is an enormous class of poorly-understood conditions which result in weird vague symptoms that come and go, and could be explained by many different factors. These symptoms can really destroy your quality of life, but it can be almost impossible to get them diagnosed, and there are often poor treatment options even if you do. I really try not to take my health for granted now. We are well off financially, but it doesn't matter how much money we have, there's nothing anyone can do about the sort of condition my wife has, at least currently.
- sarchertech 2y ago
  >Tell me you don't know anyone with an autoimmune disease, without telling me you don't know anyone with an autoimmune disease! My dad has rheumatoid arthritis, my grandmother had rheumatoid arthritis and died from leukemia likely caused by treatment for it. The same grandmother's brother died of an autoimmune lung disease. My favorite uncle has been living with MS for 20 years. I have a family friend with Lupus. And a friend with Type-1 diabetes.
  - lemming 2y ago
    And they all got diagnosed with no problem? If that's the case, then they were lucky in my experience. Obviously not lucky to have the conditions, which are objectively terrible, but having a condition like this and fighting to have it recognised and treated is a truly awful experience. I guess looking at your list they're mostly the better-known autoimmune conditions (except for Lupus and perhaps the lung one), and diagnosis might have been easier.
itsoktocry 2y ago
>To be honest just from that list of symptoms, my first guess would be aging Is the average person in such bad health that they believe you're heading downhill in your late twenties??? In most sports this is peak athleticism. I'm in my mid forties, and obviously I'm slowing down, but if I felt those symptoms I'd be concerned, too.
- sarchertech 2y ago
  >late twenties I was curious so I looked up the author on LinkedIn and he appears to be in his 40s. Where did you get late 20s? >but if I felt those symptoms I'd be concerned, to The problem is "felt those symptoms" is subjective. One person might complain because they're a little more tired after a workout than they were in their 20s, but another person might not even notice the exact same thing. One person might be hyper aware of every little muscle spasm and twinge of pain, another person might just ignore it. There's actually a fair bit of evidence that depression can make people experience normal muscle contractions used to move food through your GI tract as pain. Doesn't mean it's not real pain to the person involved, but it does make non specific belly pain very unhelpful for doctors trying to diagnose underlying medical issues.
deleted 2y ago
[deleted]
noslacknoops 2y ago
I had similar experience to OP. After 5 years and 20k USD spent for scattered pieces from various expensive specialists, I finally got diagnosed with AS at 27. This is not about aging at all. The disease (or disorder) doesn't have any known treatment, it only can be slowed down with expensive meds. The diagnosis is very tricky because the destructive effect - ossification of joints - happens slowly and mostly invisible on any type of modern (and expensive) imagery.
m463 2y ago
You might have compassion fatigue. I've worked in tech support too, and at the beginning some people were just doing things wrong. I tried to give them advice, but they weren't always willing to listen, or it led to lots more work to fix the root cause. I started to learn to help them with the current problem only, and not get philosophical because the time saved could help other people. But this gets turned around if you are the person with the problem. It turns into people helping you by treating a symptom instead of doing systemic / holistic diagnosis and treatment. I've found lots of people who have struggled with medical conditions, only to finally get a diagnosis (and treatment!) that looking backwards was blindingly obvious.

ANighRaisin 2y ago

> It wasn't until I visited a rheumatologist who looked at the combination of my symptoms and genetic test results that I learned I likely had an autoimmune condition AI didn't actually give the initial possibility of having an autoimmune disease.

yieldcrv 2y ago
The next paragraph says the AI gave that answer before the rheumatologist visit So it’s functioning as a second opinion
Aurornis 2y ago
> that I learned I likely had an autoimmune condition “Likely” had? I read your post and comments last week when you copied it across a lot of subreddits, but I feel like the specific details of your story are still changing. I understand you want to promote your side project, but the way you’re vaguely promoting it as having solved a medical mystery is playing a dangerous game with people who are desperate to hear answers from your tool.

pjc50 2y ago

I can see both sides of this, because while I've had similar tech support experiences I also know a lot of people who've had long experiences trying to get chronic health conditions understood or even acknowledged. Any kind of chronic pain condition is bad for this, but endometriosis seems to be particularly bad. Also ME/CFS and related things like MCAS. I don't really know what the answer is. If AI systems are going to be used to deny people coverage (and they will be), why shouldn't patients have AI of their own? On the other hand, there's plenty of examples of AI giving out completely wrong advice, and it may be difficult for doctors to get them to accept that. Not to mention entire politicised subcultures are already built around medical misinformation.

sarchertech 2y ago
It sucks being the individual in this process. The only real solution is to develop better models for understanding what's going on so that we can come up with objective criteria and testing. To an external observer, there is no difference between someone who has a very low pain threshold and experiences normal body wear as extremely painful, and someone who has some mechanical condition causing pain. > but endometriosis seems to be particularly bad. I've known people who had endometriosis successfully treated after a long struggle to get someone to believe them. And I've known someone who after a long struggle to convince someone to believe them, finally found someone. Then underwent extremely invasive and expensive surgery with no improvements. It's an extremely difficult issue and it sucks for everyone involved.

someothherguyy 2y ago

> It's the same in any profession. I worked at Geek Squad during college. Someone comes in 30 times because "my computers feels a little slow", we've ran every test we can think of, and nothing is wrong. In that case I'm going to place the blame on either user perception--this specific customer has unreasonable expectations about what is slow and fast. Or there's a minor non-serious issue with his computer that no one is likely to be able to diagnose without doing something seriously invasive that is likely to cause more harm than the issue. I would hope a medical professional has some baselines to compare against unlike your methodology at Geek Squad. You could have ran benchmarks, found a machine with identical hardware, etc. IMO, in both of these cases (medical and geek squad) there are issues with diagnostic methodology.

sarchertech 2y ago
>You could have ran benchmarks, found a machine with identical hardware, etc. 1. In similar cases I couldn't find a machine with identical hardware to a 5 year old computer without spending way more money than this was worth. Even if I did the only way to get an accurate comparison would be to wipe both machine and install an OS from scratch so that they are running the same software--the customer doesn't want us to do such an invasive procedure. Extrapolate both of those problems to actual humans and you'll see the issues here. 2. Almost all of his complaints are subjective and impossible to objectively measure. We have no way to objectively measure things like feeling fatigue and pain.
- someothherguyy 2y ago
  I didn't mean to trigger a defense, but I don't think you are considering all the possibilities. > Even if I did the only way to get an accurate comparison would be to wipe both machine and install an OS from scratch so that they are running the same software--the customer doesn't want us to do such an invasive procedure. You don't need to do any of that if you run benchmarks against averages. For example, PassMark or Geekbench are decent tools for assessing expected performance.
  - sarchertech 2y ago

jimnotgym 2y ago

Also, the person was able to submit the test results from the 30 visits into the AI model... I fed into ChatGPT my similar symptoms and test results and it came up with a variety of diseases that I, after further testing, don't have.

makehistory 2y ago

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.

deleted 2y ago

[deleted]

tasty_freeze 2y ago

My wife had EDS (Ehlers Danlos Syndrome), a genetic condition that results in malformed collagen -- it is too stretchy. She wasn't diagnosed until she was 35, even though in retrospect the symptoms were obvious. She had five knee surgeries, starting at age 20, to address instability and knee pain that were not caused by any injury (nor has she ever been overweight), just standing and walking like an average person. She has no foot arch, bruises very easily, has velvety soft skin, has an unusually high arch in the roof of her mouth, and has POTS (postural orthostatic tachycardia syndrome). These are all common hallmarks of EDS, but no doctor connected the dots until the 5th surgery. BTW, none of the surgeries helped and in fact made things worse.

nonchalantsui 2y ago
Just wanted to add that often times these stories of doctors not taking patients seriously (when eventually they do get diagnosed with something serious) involves women because of how vastly substandard medical testing and research is for women. A lot of men won’t have that same experience, they’ll have the experience of waiting too long to ask for help. Which in a dark ironic manner is one way of keeping things equal, one won’t be taken seriously for 5 years, the other won’t ask for help for 5 years!
- shermantanktop 2y ago
  Trust me, men can have the same experience. For whatever reason, these difficult-to-diagnose conditions affect women more, but the experience of being shunted around, given inappropriate treatment, being referred to PT as a way to get rid of the patient, it all happens to men too. I’ve concluded that most doctors are highly credentialed decision trees, they all start at the top of the tree no matter your history, and if they hit a dead end you’re going to told you are the problem, directly or indirectly.
- rayalez 2y ago
  As a guy struggling with a confusing health issue for close to a decade, and having the exact same experience, I'll ask you to keep your stereotypes to yourself. It's weird how people who complain about inequality and lack of empathy towards one group, are completely incapable or unwilling to offer any of that to other people.

RockRobotRock 2y ago

I get the sentiment of what you're saying, but being dismissive about someone's health concerns is cruel. If anything, it's a bit sad that this person felt so let down by their healthcare system that they decided to build software that glues their EMR and LLMs together (maybe that was therapeutic in and of itself)

Aurornis 2y ago

> I really don't buy that this person's AI tool did anything here. The author fed their medical records to the tool and then, as far as I can tell, the tool included autoimmune disease as a possible explanation. Every comment that I saw asking for clarification received a vague response. The closest I can see is that the LLM and rheumatologist both proposed “an autoimmune condition” around a similar time, though the answer about which came first is also unclear. The catch is that for the author to even have a rheumatologist referral to begin with, some previous combination of directors would have had to have suspected an autoimmune possibility and created some documentation to that effect. Those documents were supposedly fed into the tool, which obviously would have surfaced some of the data and possibilities that led to a rheumatologist referral. So I agree. The way this tool is being presented as diagnosing a mystery illness by itself feels very misleading. I saw this spammed across multiple subreddits last week when the author was trying to promote it. I think maybe they set out trying to get attention on their AI side project on their GitHub profile, but got a little carried away with the angle that it was diagnosing medical mysteries.

ckcheng 2y ago
> to even have a rheumatologist referral to begin with, some previous combination of [doctors] would have had to have suspected an autoimmune possibility and created some documentation to that effect This is a good point. Even when a diagnosis is obvious, a doctor may not say it outright and instead make a referral to a specialist because it’s not their specialty to diagnose that condition. This is a good thing because they’re not that specialist so they could be wrong about it, and if they are right, then they should make that referral anyway - and end result is the same i.e. a referral.
pogue 2y ago
I don't see the harm in something like this. If you were to train your own LLM specifically on medicine & medical data, then show it your lifetime history of doctors visits, blood work, what drugs you're taking, have taken, symptoms and etc etc etc there's a decent probability it could give some perspective you might not be able to get elsewhere - especially in the broken US healthcare system. Having access to multiple specialists in many different fields is something a large % of the population simply doesn't have access to for a variety of reasons. I think the issue is people might assume it's going to spit out your exact diagnosis 100% of the time right off the bat. That's obviously not true, but that's not what I got from reading the description of the project. It sounds more like a potential useful tool for folks to have as an additional option, and then to bring that information to a doctor to see if it pans out. Regardless, one extremely helpful thing I got out of reading the reddit thread was the mention of an unrelated project called Fasten, which will apparently allow you to request all your medical records from many sources and then self host them: Fasten is an open-source, self-hosted, personal/family electronic medical record aggregator, designed to integrate with 100,000's of insurances/hospitals/clinics https://github.com/fastenhealth/fasten-onprem https://github.com/fastenhealth/fasten-onprem

lr4444lr 2y ago

It's even worse than that. Having various lab panels outside of the reference range can be perfectly normal temporal variation and not indicative of anything wrong unless it is very extreme. Good doctors treat a patient, not a number. This doesn't mean I'm dismissing AI for diagnostics outright, but multiple good doctors have confirmed to me that many auto-immune diseases are fiendishly hard to diagnose as diseases in and of themselves vs. inflammation downstream from some other condition. The main problem isn't medical incompetence or apathy.

jacksnipe 2y ago

10 years ago the NLP lab I was working in was trying to build a system like this for autoimmune disorders partnered with a hospital. Autoimmune diagnosis is broken, and it IS a systems problem. The hospital system itself incentivizes compartmentalization of your different body systems to different specialists, because it allows the hospital to do less central planning and smoothes out the financial side of things (e.g. which departments do we invest in next year).

vjk800 2y ago

I don't know if I can even blame the doctors for that. I mean, for a list of very generic and vague symptoms like that, there are probably thousands of viable diagnoses. Running every possible test to catch some rare disease every time someone comes in complaining that they "feel fatigued" would be completely unfeasible. Even if the cause is found, for many diseases the treatment is just "eat healthy and exercise". People think medicine is like fixing bugs in a code. Just a lot of tests, eventually a single cause is found, a pill is taken and the person is fixed. Reality seems to be closer to this: as you age, you accumulate damage everywhere. Eventually this damage is going to kill you, but before that it just makes you a bit slower and more tired. Sometimes, if you're lucky, some of this damage can be reversed, but mostly not.

lemming 2y ago

But when you have a list of vague symptoms that aren't very serious, could be caused by anything, and your records show 30 visits to hospitals and specialists, and you start talking about experimental life extension treatments, the vast majority of doctors are going to write you off almost immediately as a hypochondriac. Tell me you don't know anyone with an autoimmune disease, without telling me you don't know anyone with an autoimmune disease! This is exactly the experience of a lot of people, my wife included. It took years to finally get a diagnosis, partly because it took her a long time to convince herself that it wasn't all in her head (much of which was due to gaslighting and general incompetence of doctors), and then once she was convinced she had a problem, finding a doctor who would actually take her seriously was a total mission. There is an enormous class of poorly-understood conditions which result in weird vague symptoms that come and go, and could be explained by many different factors. These symptoms can really destroy your quality of life, but it can be almost impossible to get them diagnosed, and there are often poor treatment options even if you do. I really try not to take my health for granted now. We are well off financially, but it doesn't matter how much money we have, there's nothing anyone can do about the sort of condition my wife has, at least currently.

sarchertech 2y ago
>Tell me you don't know anyone with an autoimmune disease, without telling me you don't know anyone with an autoimmune disease! My dad has rheumatoid arthritis, my grandmother had rheumatoid arthritis and died from leukemia likely caused by treatment for it. The same grandmother's brother died of an autoimmune lung disease. My favorite uncle has been living with MS for 20 years. I have a family friend with Lupus. And a friend with Type-1 diabetes.
- lemming 2y ago
  And they all got diagnosed with no problem? If that's the case, then they were lucky in my experience. Obviously not lucky to have the conditions, which are objectively terrible, but having a condition like this and fighting to have it recognised and treated is a truly awful experience. I guess looking at your list they're mostly the better-known autoimmune conditions (except for Lupus and perhaps the lung one), and diagnosis might have been easier.

itsoktocry 2y ago

>To be honest just from that list of symptoms, my first guess would be aging Is the average person in such bad health that they believe you're heading downhill in your late twenties??? In most sports this is peak athleticism. I'm in my mid forties, and obviously I'm slowing down, but if I felt those symptoms I'd be concerned, too.

sarchertech 2y ago
>late twenties I was curious so I looked up the author on LinkedIn and he appears to be in his 40s. Where did you get late 20s? >but if I felt those symptoms I'd be concerned, to The problem is "felt those symptoms" is subjective. One person might complain because they're a little more tired after a workout than they were in their 20s, but another person might not even notice the exact same thing. One person might be hyper aware of every little muscle spasm and twinge of pain, another person might just ignore it. There's actually a fair bit of evidence that depression can make people experience normal muscle contractions used to move food through your GI tract as pain. Doesn't mean it's not real pain to the person involved, but it does make non specific belly pain very unhelpful for doctors trying to diagnose underlying medical issues.

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noslacknoops 2y ago

I had similar experience to OP. After 5 years and 20k USD spent for scattered pieces from various expensive specialists, I finally got diagnosed with AS at 27. This is not about aging at all. The disease (or disorder) doesn't have any known treatment, it only can be slowed down with expensive meds. The diagnosis is very tricky because the destructive effect - ossification of joints - happens slowly and mostly invisible on any type of modern (and expensive) imagery.

m463 2y ago

You might have compassion fatigue. I've worked in tech support too, and at the beginning some people were just doing things wrong. I tried to give them advice, but they weren't always willing to listen, or it led to lots more work to fix the root cause. I started to learn to help them with the current problem only, and not get philosophical because the time saved could help other people. But this gets turned around if you are the person with the problem. It turns into people helping you by treating a symptom instead of doing systemic / holistic diagnosis and treatment. I've found lots of people who have struggled with medical conditions, only to finally get a diagnosis (and treatment!) that looking backwards was blindingly obvious.