• chunes@lemmy.world
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    1 day ago

    I’ve had a progressive, disabling disease for the past 12 years that no one could diagnose. I have found that AI is very good at pulling in all sorts of case studies that correlate with my symptoms. After working with it over a period of months, carefully pushing back against any inconsistencies, checking its sources, etc. We were able to zero in on a very rare disease that seems to closely fit my situation.

    Thank goodness I have a neurologist who is open to suggestions. I presented the evidence to him and now it’s his top consideration. He wants to send me to mayo clinic to be sure, but so far immunotherapies have been helping me which is even more evidence for it.

    Only about 300 people in the US have this disease. I would have never figured it out without AI.

      • chunes@lemmy.world
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        5 hours ago

        Isaacs syndrome. What happens is the immune system mistakenly attacks the machinery that re-polarizes the peripheral nerves after firing, so they fire constantly, which causes all sorts of problems. It’s an ALS mimic, so I was initially diagnosed with that. But after a long time of not dying, plus EMG inconsistencies, it became clear that was wrong.

        I really wish you luck. It’s a hard and lonely road.

    • eightpix@lemmy.world
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      22 hours ago

      Wow. An actual, real life, good story involving generative AI doing what it’s supposed to do. Filtering heaps of data, searching for virtually invisible minutae, to make life more livable.

      Thanks for sharing! I hope this healing journey obly gets better for you.