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AdariI

808d

hello! my sister had hypokalemic periodic paralysis and I've been wondering what some of your guys stories are with it. it's very rare and never met anyone else with it. she was diagnosed when she was a teen, it was a really hard struggle dealing with at first. the first time it happened Im 5 years younger than her and we were home alone. we both didn't feel good so we stayed sick at home from school. she fell in the hallway and was temporarily paralyzed and I had no idea what was happening so I called an ambulance and my dad came and went to the hospital with her. she was told to take potassium everyday but she could hardly remember to take it and it was so disgusting she would nearly throw up when she took it. I always felt so bad, but when she got a medical card for Muarjuana it helped her more than any medicine did. what is your guys stories on it???

Top reply
    • Butterflame

      109d

      @Anunnaki Full honesty on that, I have no idea. I got re-diagnosed a bit ago (the diagnosis didn't carry across insurance if I understand correctly), and they didn't specify *what* type, just that it was a type that did this, so possibility that the original diagnosis was a little off on the typing because it didn't involve the blood work stuff? Idk. From what I've researched of both, I have the triggers of both, but I have no idea for any of the science or anything behind it. Sorry if this is a little incoherent, I'm very tired haha

    • Butterflame

      624d

      Hi! I'm really late, but I have Hyper and Hypokalemic Periodic Paralysis! For me it takes the form of muscle weakness, rarely full-on paralysis, but it's been rough all the same. I've hit a point where it comes with painful muscle spasms, so I use a wheelchair when I'm too weak/in pain to walk, and a cane when I need some extra support with my episodes. I got it genetically, and they were looking for it pretty early, so when I got my first episode (I believe around 2?) I was diagnosed because of family history. I haven't found anyone else in the world with it, yet, either, but I'm glad to see someone else has it!

      • Anunnaki

        109d

        @Butterflame Hey, I also have genetic H-PP and was diagnosed when I was three. I have partial paralysis attacks often and some fulll body paralysis attacks that last around 24-48 hrs at a time. Taking effervescent Slow-K tabs can help sometimes. I have a question though; how are you both hypo AND hyper? As far as I know, you can't.

        • Butterflame

          109d

          @Anunnaki Full honesty on that, I have no idea. I got re-diagnosed a bit ago (the diagnosis didn't carry across insurance if I understand correctly), and they didn't specify *what* type, just that it was a type that did this, so possibility that the original diagnosis was a little off on the typing because it didn't involve the blood work stuff? Idk. From what I've researched of both, I have the triggers of both, but I have no idea for any of the science or anything behind it. Sorry if this is a little incoherent, I'm very tired haha

☝ 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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