Comment by lemming | Hacker News Reader

Comment by lemming | Hacker News Reader

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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.

>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.

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.

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.

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.

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