Why didn't the medical procession find my autoimmune disease after $100k and 30 hospital visits?
Why didn't the medical procession find my autoimmune disease after $100k and 30 hospital visits?
> The most frustrating part wasn't just the lack of answers - it was how fragmented everything was. Each doctor only saw their piece of the puzzle: the orthopedist looked at joint pain, the endocrinologist checked hormones, the rheumatologist ran their own tests. No one was looking at the whole picture.
Old broken systems tend to get replaced, not improved.
The post is vague, but the doctors did find the “likely” autoimmune condition around the same time that the LLM suggested it.
Which is not surprising, because this tool was simply taking the medical records and doctors reports and putting them into the LLM.
The author has also been dodging questions about what the LLM actually said. Reading between the lines, it sounds like it gave a list of possible explanations including “maybe an autoimmune condition”, not an actual diagnosis.
The more you go beyond the common diseases that they see a hundred times a year the more your chances of getting the right treatment approach zero. Occam's razor is usually right when diagnosing people, but it kills the uncommon cases.
"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."
It should prbly be phased as
"why ppl fall for any BS on the internet"
I've shared this story before on here a few times: I have ankylosing spondylitis, and it took me a few years to get diagnosed, but even after I got diagnosed treatment didn't seem to help. Humira, steroid shots, none of it. All I could do was eat NSAIDs like candy, which helped in the short term but kinda fucked me over in the long term.
Then I saw a gastroenterologist to ask about a hemorrhoid, and he took one look at me and my file—walking with a cane at a very young age, HLA B27+, offhand complaints about "IBS" (note: it's not officially IBS unless you've ruled out other problems!)—and recommended me for a colonoscopy. My health insurance is decent, so I agreed, and he saw a bunch of inflammation in there. Turns out I have Crohn's, and the AS is likely downstream of that; when I started taking oral medication that isn't supposed to have any effect outside the GI tract, my arthritis vanished.
But your average provider won't see a patient with joint pain and skin problems and think "well obviously we need to stick a camera up their butt."