• pelespirit@sh.itjust.worksM
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    24 days ago

    Here is an interview with her. She had it bad:

    “I do have a chronic health condition, which made it difficult to pinpoint if it was that that was suddenly getting worse, or whether it was [the damage to the ear] that was causing neurological changes, but I literally couldn’t walk straight; I was having what looked like strokes where I would collapse.” A violinist, she was told by doctors to give up playing. When the COVID pandemic arrived a few months in, she was forced to shield because of ultimately false suspicions that she had MS. “I got really frustrated,” De La Mata says. “I wasn’t getting any of the answers I wanted. It was, ‘Your hearing is fine, you’re young, you’re healthy,’ and it’s like, well clearly I’m not if I can’t walk and people are feeding me.”

    https://thequietus.com/interviews/lola-de-la-mata-oceans-on-azimuth-tinnitus-interview/

    • SkyeStarfall@lemmy.blahaj.zone
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      23 days ago

      “you’re young, you’re healthy”, and its like, well clearly I’m not if I can’t walk and people are feeding me.

      Yup, sounds like a doctor alright

      I’ve had my own fair share of doctors not believing my struggles. Sometimes even directly getting in the way of medical help. And yes, it’s incredibly unhelpful.

      • LaunchesKayaks@lemmy.world
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        23 days ago

        I spent 20 years trying to find a rheumatologist who would take my positive lupus test results, symptoms, extensive family history, and potential comorbidities seriously and give me a diagnosis and treatment. Nobody would listen until I was 23 because I was “too young.” After 23, they started accusing me of just wanting medical marijuana.

        At 27 I finally found a doctor that would take me seriously. We spent 2 hours going over the 15 years of medical records of mine that are accessible digitally, as well as some physical records from before that that my mother kept in a safe. The doctor ordered an absurd amount of tests and gave me a diagnosis when they all came back indicating that I, indeed, have lupus. She saw the same results in all of my records, too. I’ve tested positive and have had all of the other indicators my entire life. Like I am a textbook case of Systemic Lupus Erythematous that attacks the joints and connective tissue.

        She started me on treatment and for the first time in my life, I’m not ruled by my pain and fatigue. I actually have a life now. I have started doing things that I’ve always dreamed of doing because now I can. I’m not chained to my bed anymore.

        All of the doctors that refused to treat me despite positive test results and symptoms because I was “too young” or “just wanting marijuana” can rot in Hell. “Do not harm” my ass. I spent twenty years suffering, with multiple pediatricians and general practitioners sending me to every rheumatologist they knew of to try to get treatment for what they, non-specialists, believe I suffer from.

        I drive two and a half hours one way every 6 months to see my rheumatologist and it’s worth it because she gave me my life. I’d say she gave my life back to me, but I never had one to begin with. I’m actually living now. 20 years too late if you ask me, but better late than never.

  • Jhuskindle@lemmy.world
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    22 days ago

    Wait what? I can literally put my head to my kids ear and she can hear my tinnitus. How is this news?

  • kernelle@lemmy.dbzer0.com
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    24 days ago

    I’ve always learned it comes from damaged hair cells inside the ear, how could it be anything but physical? Very surprised it can be picked up with a microphone in an anechoic chamber though

      • derek@infosec.pub
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        24 days ago

        If you close your eyes tightly you can induce the perception of color. If you stand in a doorway and lift your arms to the side so that the backs of your hands are pressing against the inside of the door frame, keep pressing for 60 seconds, then step out of the doorway and relax your arms: it’ll feel like your arms are floating.

        The body’s systems are complex and part of reliably filtering signal from noise in such systems is establishing a baseline while in a steady state. Our brains are pretty good at filtering out noise but the pressures or degradations which lead to tinnitus seem to trick the brain into accepting some noise as signal.

        If you’re looking for a deep dive then the following paper does an excellent job of outling what we know and what our best guesses are so far: https://www.sciencedirect.com/science/article/abs/pii/S0306987724002718

        It’s jargon-laden but nothing someone armed with a dictionary can’t handle. 🙂