Abby,
Your quote comes from Deb Cavel-Greant's website. Incidentally, she is one of the folks with HKPP who was originally diagnosed with MG. She even authored "You, Me, and Myasthenia Gravis." Her site also says about Hyperkalemic PP: "Symptoms usually develop in the first years of life, but
invariably begin by age 20" The gentleman I sat next to at the conference did not get symptoms until he turned 42, and he has been genetically confirmed with HyKPP.
Please don't misunderstand; I'm not trying to push this on you. I even used the words "long shot...." It's just that you asked "What else should I be considering..." Since you've been looking at things like surgery and worms, I just thought I'd mention it in case you wanted to try the meds for a month or two just to see if you might be one of the irregular cases. Take it or leave it as you will, but please don't let your age be a determining factor for you.
It's probably a long shot for me as well, but I'm at the point where I may never get definitive answers and I'm just going to try treatments for similar conditions until I find something that helps or die trying.
Quote:
Originally Posted by Stellatum
Tatia, I've been reading about the different kinds of periodic paralysis. I never wake up weak, or very rarely. Here's something, though: I often find out I'm weak when I stand up after sitting for a while, at a movie, at a restaurant, or a church. Many's the Sunday I breezed into church on my own two feet but had to be dragged out. All the little old ladies are very concerned about me.
I know you said that it's been documented as starting in very old people, but that seems to be extremely rare. from what I read ("almost without exception, the first attacks begin before age 25"). I'm trying to think back to anything I could have had when I was younger that was an episode. I used to have sleep paralysis: I would be awake and conscious (able to hear things going on around me) but completely unable to move. But I think that was textbook sleep paralysis. If someone touched me, I'd immediately snap out of it. That's sleep paralysis: my mind was awake but my body was still asleep.
Anyway, I got my first noticeable symptoms of what I think is myasthenia at age 42.
I'm going to do some obsessive journaling.
I haven't had an attack for the last few days, but I can feel the normal weakness in my arms and neck. Today (a good day) I had to rest halfway through slicing a loaf of bread, and as I type this I'm slumped back so that I can rest my head on the back of the chair, because my neck's tired. That's normal myasthenia stuff--worse in the evenings. The "episodes" are in addition to that.
Abby
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