4 ms·

It’s also hubris and overconfidence. My child had a disease that’s very rare and hard to diagnose. A week at Johns Hopkins with hundreds of thousands of dollars

It’s also hubris and overconfidence. My child had a disease that’s very rare and hard to diagnose. A week at Johns Hopkins with hundreds of thousands of dollars of tests found nothing. The doctors sent us home with a “it’s just a virus, it’ll probably go away in a few weeks”. Some 72 hours later, armed with google, Wikipedia, the rest of the internet, and coffee (with very little sleep). I figured it out. But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”. 30-or-so specialists from a variety of top US hospitals kept saying the same thing (with the addition: “if Hopkins says you are wrong, you are wrong”. But then, we saw a specialist in a world top-10 hospital outside the US, who immediately agreed with my diagnosis. Treatment started the following week (only 3 months lost) and the condition started to resolve. I kept in touch with the doctors I had seen before. They didn’t care. Some thought it was still the wrong diagnosis. Until a year later, near complete remission - and pathology of a resection - confirmed it 100% Modern medicine is part science, part craft, part cult. You tend to meet the cult aspect more often with rare or hard-to-diagnose diseases.

theshackleford 1y ago
> But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”. I am sorry to hear that. This is the path once upon a time I would of taken. Just assuming it was bad to be Dr Google as I'd learned from a young age. Let the doctors do their job and all that. Now I am the complete opposite. My neurosurgeon HEAVILY pushed me to start "googling" and "reading whatever you can" and straight up told me not to trust general practitioners as the vast majority of them are woefully ill equipped to deal with anything I am dealing with. Thank god I took his advice, because I almost did the same thing again. For months GP's were telling me my new and expanded pain was the same old SCI injury "flaring" my CNS, and that I should just take more drugs/do more physio and literally I got asked "what do you want us to do? Take the painkillers like we do told you" Well, three specialists (and two neurosugeons later) its NOT the existing injury, its severe bilateral cervical radiculopathy from where my cervical spine is disintegrating on the layers above and below my original fusions and its not going to magically get better by throwing even more drugs at it, or moving my physio sessions from 3 times a week to 5 times a week. Once upon a time, I would never have said this, not deeming myself to know enough to possibly say it, but I have met now a lot of very useless doctors, like just outright incompetent.

theshackleford 1y ago

> But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”. I am sorry to hear that. This is the path once upon a time I would of taken. Just assuming it was bad to be Dr Google as I'd learned from a young age. Let the doctors do their job and all that. Now I am the complete opposite. My neurosurgeon HEAVILY pushed me to start "googling" and "reading whatever you can" and straight up told me not to trust general practitioners as the vast majority of them are woefully ill equipped to deal with anything I am dealing with. Thank god I took his advice, because I almost did the same thing again. For months GP's were telling me my new and expanded pain was the same old SCI injury "flaring" my CNS, and that I should just take more drugs/do more physio and literally I got asked "what do you want us to do? Take the painkillers like we do told you" Well, three specialists (and two neurosugeons later) its NOT the existing injury, its severe bilateral cervical radiculopathy from where my cervical spine is disintegrating on the layers above and below my original fusions and its not going to magically get better by throwing even more drugs at it, or moving my physio sessions from 3 times a week to 5 times a week. Once upon a time, I would never have said this, not deeming myself to know enough to possibly say it, but I have met now a lot of very useless doctors, like just outright incompetent.