4 ms·

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 obj

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.

sarchertech 2y ago
Most of them had pretty serious outwardly observable symptoms, so diagnosis was fairly quick. For the lung disease he went from no symptoms to dead within a few weeks, and there was no specific diagnosis other than some kind of autoimmune response. My mom has a non-autoimmune related health issue (Costochondritis) that has been difficult to diagnose and she's been dealing with that for the last 7 years or so. It sucks having a health problem that no one can diagnose. Even in the case where you don't have a mechanical issue, the pain is still real. My concern is that for every person with a rare disease causing vague symptoms, there are more people with similar vague symptoms that don't have an underlying rare disease. When you tell people things like "keep going to new doctors until you find one that believes you", or "do your own research", or "use my AI tool that I diagnosed myself with", those people who don't have an underlying disease will do those things too. And if they do enough tests, or see enough doctors, they'll eventually get a diagnosis. If they see enough doctors, and push hard enough, they'll eventually find a quack who will do all kinds of procedures on them. One of my mom's friends was convinced she had endometriosis, she doctor shopped for years until she found someone willing to do surgery in a city several hours a way. She still suffers from complications from the surgery, and her other symptoms are no better off. I know of a kid who came very close to dying from an infection because his parents were convinced that he had chronic Lyme and they doctor shopped until they found someone willing (but not qualified) to install a central line to administer antibiotics. Even if you have an underlying condition, doctor shopping and doing your own research is no guarantee that your eventual diagnosis is the right one. I'm not saying you shouldn't advocate for yourself. Nearly everything is a continuum, but when you cross the line into "Doctors are idiots, only I can diagnose myself territory", you're headed into dangerous waters. Educating yourself is fine, diagnosing yourself is the problem.
- lemming 2y ago
  My concern is that for every person with a rare disease causing vague symptoms, there are more people with similar vague symptoms that don't have an underlying rare disease. This is a problem, for sure, and additionally the people with vague (perhaps even imagined) symptoms probably vastly outnumber the ones with legit but weird conditions. But for the people with those conditions who can't find a doctor who will take them seriously, what are they supposed to do? I know a few of them, and I'm unwilling to basically throw them under the bus for the greater good. IMO (going back to OP), if LLMs give them a few options that they can go back to a doctor and ask "Could it be this? How can we rule that out?" could be really life-changing.

sarchertech 2y ago

Most of them had pretty serious outwardly observable symptoms, so diagnosis was fairly quick. For the lung disease he went from no symptoms to dead within a few weeks, and there was no specific diagnosis other than some kind of autoimmune response. My mom has a non-autoimmune related health issue (Costochondritis) that has been difficult to diagnose and she's been dealing with that for the last 7 years or so. It sucks having a health problem that no one can diagnose. Even in the case where you don't have a mechanical issue, the pain is still real. My concern is that for every person with a rare disease causing vague symptoms, there are more people with similar vague symptoms that don't have an underlying rare disease. When you tell people things like "keep going to new doctors until you find one that believes you", or "do your own research", or "use my AI tool that I diagnosed myself with", those people who don't have an underlying disease will do those things too. And if they do enough tests, or see enough doctors, they'll eventually get a diagnosis. If they see enough doctors, and push hard enough, they'll eventually find a quack who will do all kinds of procedures on them. One of my mom's friends was convinced she had endometriosis, she doctor shopped for years until she found someone willing to do surgery in a city several hours a way. She still suffers from complications from the surgery, and her other symptoms are no better off. I know of a kid who came very close to dying from an infection because his parents were convinced that he had chronic Lyme and they doctor shopped until they found someone willing (but not qualified) to install a central line to administer antibiotics. Even if you have an underlying condition, doctor shopping and doing your own research is no guarantee that your eventual diagnosis is the right one. I'm not saying you shouldn't advocate for yourself. Nearly everything is a continuum, but when you cross the line into "Doctors are idiots, only I can diagnose myself territory", you're headed into dangerous waters. Educating yourself is fine, diagnosing yourself is the problem.

lemming 2y ago
My concern is that for every person with a rare disease causing vague symptoms, there are more people with similar vague symptoms that don't have an underlying rare disease. This is a problem, for sure, and additionally the people with vague (perhaps even imagined) symptoms probably vastly outnumber the ones with legit but weird conditions. But for the people with those conditions who can't find a doctor who will take them seriously, what are they supposed to do? I know a few of them, and I'm unwilling to basically throw them under the bus for the greater good. IMO (going back to OP), if LLMs give them a few options that they can go back to a doctor and ask "Could it be this? How can we rule that out?" could be really life-changing.