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yellowbug

672d

I've had "seizures" or "episodes" for as long as I can remember. Over time the "seizures" became more frequent. I started medication and haven't had one in a about year now. I put the word seizure in quotation marks because I haven't been officially diagnosed. I've done every test more times then I can remember but it always shows up blank. Doctors couldn't ever find any real reason so they would always give me a temporary reason with no solution. Doctors kept denying my condition for years and years. Part of the denial was I experienced weird symptoms that most doctors had never heard of before, those symptoms still have no explanation and I have yet to find anyone who can relate to them. I live right by one of the countries top medical schools and even with all their experience and top equipment they couldn't diagnose me. It wasn't until two medical professionals witnessed one and confirmed it was a seizure that I was put on medication. However doctors still refuse to diagnose me and have given up running tests. I live with a condition that has no explanation and no real diagnosis. It feels discouraging and like Im going to be stuck never knowing why and never having any real solutions due to the lack of why.

    • blueflovver

      672d

      Does the diagnosis really matter? As long as the meds keep symptoms in check all's good isn't it?

      • yellowbug

        672d

        @blueflovver the only issue I have with not having a diagnosis is idk what causes it. The medicine keeps it in check but outside of that Idk how to prevent it. Like how some people know to avoid flashing lights. For now the medicine is great i just worry if it stops working

        • dooby

          663d

          @yellowbug also look in to gilbert syrdrome as well. Doctor's know very little about it and it is not diagnosied ever. Gilbert syrdrome has to do with you liver. These are some suggestions i can give you.

        • dooby

          663d

          @yellowbug septic heart defect. Look in to that please. I nearly lost my life dued to doctors misdiagnosising me and telling me their was no problem with my heart because the heart ekg came out stable. The only reason my was found because of the old scanner their use when their give you a stress test. My hole was on the wall of my heart.

        • blueflovver

          672d

          @yellowbug oh gotcha. They probably don't know treatment if it's something so hard to diagnose. There must be few people experiencing it. I hope your epilepsy meds keep working. My neurologist said that most of her patients with epilepsy stay on the same med for the rest of their lives without issues so there's hope!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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