4 ms·

I have a condition where at least 25% of people show negative on the primary blood test. This is well known at top clinics. Lots of other tests exits that show

I have a condition where at least 25% of people show negative on the primary blood test. This is well known at top clinics. Lots of other tests exits that show you have it. I’ve had a dozen doctors all declare i definitely don’t have the condition based on negative. Despite having every single symptom and some other blood tests that strongly suggested it. I had to fight like crazy to get the other tests run. All positive. They still didn’t want to diagnose me. So then I had to push hard to start treatment. A Month later I was doing drastically better. Some of stuff you can’t fake. Doctor finally agreed that I probably had it. Every doctor since then loved to try prove I don’t have it by running the initial test. Because 25% chance means 0% chance.

jondwillis 4y ago
I think that experiencing medicine as an individual is often so bad because we’re statistics in a harm-reduction macro game. I try to remind myself of that at every negative healthcare interaction, and try to advocate for myself more as I age.
- treeman79 4y ago
  You have to advocate. And you have to do your own research. I would be dead if I hadn’t. You will also be called a hypochondriac at every single stage if you do any of that. By doctors, by family. Everyone. You will be told endlessly that it’s just anxiety. Family that had been frankly abusive were shocked when I started getting positive results back and responding to treatment. Some of the issues were genetic. So several Members of the family that have been dismissing me went and got tested. They were testing positive for the same conditions and that explained a lot of the weirdness in their life. Also sad to hear how a lot of my relatives died fairly young in horrible agony from same symptoms But everyone just dismissed it. No one thought that maybe it’s all related.
  - kshahkshah 4y ago
    I could not possibly agree more. You must advocate for yourself and your loved ones. My youngest had the fairly rare kawasaki's disease at 4 months old, she went from sleeping through the night at 10 weeks old to not being able to sleep for more than 45 minutes at a time, fully body rash, red eyes, cranky/irritable, and a 104 degree fever. A sick visit to our pediatrician's office resulted in us seeing the other practitioner, not ours, who couldn't figure it out. Recommended antipyretics only at that point, took blood. Still in bad shape, a night or two later we went to a children's ER where all the staff spoke to us like we were overly concerned idiot parents. Finally when we returned to our pediatrician and saw our actual doctor, she near instantly recognized it as Kawasaki's and referred us over to NYU for treatment. Once there, we were admitted to the ER, where my daughter and I stayed the entire night w/o any real help (triage). The following morning after I left and my wife took over, they came to put a line in her and start treatment (intravenous immunoglobulins [IVIg]) but "couldn't put a line in" because she had been "stuck too many times". So they recommended SEDATING HER AND PUTTING A LINE IN THROUGH HER HEART (sorry for the emphasis, I'm still mad). My wife, on little sleep called me to tell me all this and I refused the procedure. I said "no, what you're going to do is get the best phlebotomist at the hospital to put a normal line in her". They argued but eventually got someone and twenty minutes later I got a text saying they put a line in her from my wife. I mean... c'mon. The following day when I returned there were 3 doctors who were in some way I believe following my daughter's case. One of them insisted on a secondary treatment, the other two said we could go home. I asked the one doctor a series of questions which he effectively dismissed and told me to just do what he was asking. The other two on the other hand answered my questions (e.g): * if the disease comes back, will it present with the same symptoms * if the disease comes back, when will it come back, what is the median time * are their studies on recurrence of the disease etc. etc. long list I can't remember. I contacted UC San Diego, where they study Kawasaki's. Read papers, got papers in Japanese which I forwarded over to this pair of doctors who entertained my questions. They translated the papers, read them, told me the findings within. I took her home that day. I don't deal with medical "professionals" who dismiss you. Glad you didn't either.
    - treeman79 4y ago
      Intense story.
- marcosdumay 4y ago
  > we’re statistics in a harm-reduction macro game Built by overworked people that stopped studding or practicing statistics decades ago.
cjbgkagh 4y ago
I have hypermobile Ehlers Danlos Syndrome (hEDS), which is one of the most under-diagnosed conditions. The vast majority who have it will live their entire painful lives being gaslight by doctors. It's been known about for thousands of years and is incredibly easy to diagnose, yet somehow doctors still get it wrong. I have extremely low respect for doctors and the medical establishment, if they can't get hEDS right then what can get right.
- AnIdiotOnTheNet 4y ago
  I had undiagnosed hypothyroidism for 2 years of my childhood because doctors looked at my textbook symptoms and just claimed I was lazy. Ultimately I was diagnosed by my mother's coworker/friend. They were parking ramp toll booth attendants at an airport at the time. She recognized the symptoms because her dog had it. My mother had to go full Karen on a doctor until they agreed to test for it. Your average doctor is given entirely too much faith.
  - deleted 4y ago
    [deleted]
hedora 4y ago
If you want to see truly inexplicable misunderstandings of conditional probabilities by the medical industry, try having a kid in the US.

jondwillis 4y ago

I think that experiencing medicine as an individual is often so bad because we’re statistics in a harm-reduction macro game. I try to remind myself of that at every negative healthcare interaction, and try to advocate for myself more as I age.

treeman79 4y ago
You have to advocate. And you have to do your own research. I would be dead if I hadn’t. You will also be called a hypochondriac at every single stage if you do any of that. By doctors, by family. Everyone. You will be told endlessly that it’s just anxiety. Family that had been frankly abusive were shocked when I started getting positive results back and responding to treatment. Some of the issues were genetic. So several Members of the family that have been dismissing me went and got tested. They were testing positive for the same conditions and that explained a lot of the weirdness in their life. Also sad to hear how a lot of my relatives died fairly young in horrible agony from same symptoms But everyone just dismissed it. No one thought that maybe it’s all related.
- kshahkshah 4y ago
  I could not possibly agree more. You must advocate for yourself and your loved ones. My youngest had the fairly rare kawasaki's disease at 4 months old, she went from sleeping through the night at 10 weeks old to not being able to sleep for more than 45 minutes at a time, fully body rash, red eyes, cranky/irritable, and a 104 degree fever. A sick visit to our pediatrician's office resulted in us seeing the other practitioner, not ours, who couldn't figure it out. Recommended antipyretics only at that point, took blood. Still in bad shape, a night or two later we went to a children's ER where all the staff spoke to us like we were overly concerned idiot parents. Finally when we returned to our pediatrician and saw our actual doctor, she near instantly recognized it as Kawasaki's and referred us over to NYU for treatment. Once there, we were admitted to the ER, where my daughter and I stayed the entire night w/o any real help (triage). The following morning after I left and my wife took over, they came to put a line in her and start treatment (intravenous immunoglobulins [IVIg]) but "couldn't put a line in" because she had been "stuck too many times". So they recommended SEDATING HER AND PUTTING A LINE IN THROUGH HER HEART (sorry for the emphasis, I'm still mad). My wife, on little sleep called me to tell me all this and I refused the procedure. I said "no, what you're going to do is get the best phlebotomist at the hospital to put a normal line in her". They argued but eventually got someone and twenty minutes later I got a text saying they put a line in her from my wife. I mean... c'mon. The following day when I returned there were 3 doctors who were in some way I believe following my daughter's case. One of them insisted on a secondary treatment, the other two said we could go home. I asked the one doctor a series of questions which he effectively dismissed and told me to just do what he was asking. The other two on the other hand answered my questions (e.g): * if the disease comes back, will it present with the same symptoms * if the disease comes back, when will it come back, what is the median time * are their studies on recurrence of the disease etc. etc. long list I can't remember. I contacted UC San Diego, where they study Kawasaki's. Read papers, got papers in Japanese which I forwarded over to this pair of doctors who entertained my questions. They translated the papers, read them, told me the findings within. I took her home that day. I don't deal with medical "professionals" who dismiss you. Glad you didn't either.
  - treeman79 4y ago
    Intense story.
marcosdumay 4y ago
> we’re statistics in a harm-reduction macro game Built by overworked people that stopped studding or practicing statistics decades ago.

cjbgkagh 4y ago

I have hypermobile Ehlers Danlos Syndrome (hEDS), which is one of the most under-diagnosed conditions. The vast majority who have it will live their entire painful lives being gaslight by doctors. It's been known about for thousands of years and is incredibly easy to diagnose, yet somehow doctors still get it wrong. I have extremely low respect for doctors and the medical establishment, if they can't get hEDS right then what can get right.

AnIdiotOnTheNet 4y ago
I had undiagnosed hypothyroidism for 2 years of my childhood because doctors looked at my textbook symptoms and just claimed I was lazy. Ultimately I was diagnosed by my mother's coworker/friend. They were parking ramp toll booth attendants at an airport at the time. She recognized the symptoms because her dog had it. My mother had to go full Karen on a doctor until they agreed to test for it. Your average doctor is given entirely too much faith.
- deleted 4y ago
  [deleted]

hedora 4y ago

If you want to see truly inexplicable misunderstandings of conditional probabilities by the medical industry, try having a kid in the US.