Periodic Paralysis, myotonia, channelopathy and ME

Discussion in 'Neurological diseases' started by Jenny TipsforME, Nov 26, 2017.

  1. duncan

    duncan Senior Member (Voting Rights)

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    I understood @strategist question to be directed not at the diagnosis, but at how the term paralysis was being employed in the label Periodic Paralysis. If I was right, then PP likely would be correct provided it's a channelopathy - despite no paralysis being evident. PP is an overarching term(s) that encompasses a spectrum of symptoms and manifestations that range from muscle weakness to paralysis to cardiomyopathy to overt physical abnormalities etc.
     
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I was aware of that.
     
  3. Kitty

    Kitty Senior Member (Voting Rights)

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    I'm in the early stages of questioning whether ME is my only, or main, diagnosis.

    A couple of weeks ago I started potassium supplements (long story). They relieve almost all my muscle pain and a lot of my fatigue, and I no longer go all weak and staggery an hour or two after swimming or eating a big meal. I sleep properly and I'm not getting any suggestion of PEM, despite having been busy.

    It's far too soon to draw any conclusions, but I have two wildlife trips coming up in quick succession where I'll be away from home and going out most days. That should give me a clearer indication of to what extent PEM is still an issue. I don't think I'd be justified in asking whether I can be tested for a channelopathy until I understand this much better, and have at least a couple of months' worth of symptom notes.

    In the meantime, though, it's been lovely! I'm still like a rag doll when I first get up in the morning, but I'm completely used to that; I don't think the muscles in my upper legs are going to work again no matter what supplements I take, but I'll settle for having them pain free for most of the time. The acid reflux from the potassium isn't such good news...but it's been fairly mild so far.
     
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  4. Kitty

    Kitty Senior Member (Voting Rights)

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    I've had my first experience of next-day weakness today, after doing hours of spring cleaning yesterday. It wasn't as strenuous as activities like digging the garden or swimming, but cleaning the oven and all the cupboards inside and out involved a lot of working on my knees and then having to get upright again.

    My head, torso and hips have been fine today, but my arms and legs are absolutely destroyed. :laugh:

    On my first trip to the loo after getting up, my legs were so floppy that I crashed into the door frame, then the wash basin, then overbalanced and found myself leaning over the toilet hanging onto the cistern. I was marginally less drunk after a dose of potassium, but basically getting upright and walking have been a nightmare all day. It finally relented at about 8:30pm, and everything's now working as well as it normally does.

    If it turns out this is not PEM but an abortive attack of periodic paralysis, it's not surprising the two can be confused, especially without the sore throat. (I haven't had any immune-type symptoms since I started on potassium*.) My arms and legs are weak when I try to use them, sure, but when resting it feels like the profound fatigue and pain that ME patients describe. And the need to rest today has been every bit as non-negotiable as it was before.

    I still don't know what's going on, but I'm writing about it in case it helps anyone else clarify what's happening to them. For instance, it had never occurred to me to think about whether there was a difference between how my limbs feel and function the day after activity, vs the rest of my body. As soon as I do, the difference is obvious.



    * Re. the sore throats and swollen glands: I'm wondering if mine were to some extent sleep-related. They've always been worse in the mornings, and on a better day would subside once I'd been up an hour or so. My sleep has changed a lot since I started the supplements, and it's possible this has something to do with it. Maybe I was breathing differently or having apnoea episodes, which were worse when I'd over-exerted myself and so lasted all day? Who knows, though.
     
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