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Originally Posted by Stellatum
Meanwhile, I have a piece of general advice, which you may already be doing: keep a journal!
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Thanks! This is a great suggestion. I've been journaling in narrative format for years, just to get it off my chest, but I've set up a spreadsheet now where I track everything. Particularly since I went to Mayo. I want to have something that shows in a less subjective way what I am experiencing.
Quote:
Originally Posted by Stellatum
Has anyone ever mentioned hyperkalemic or hypokalemic periodic paralysis to you? If not, it may be worth typing into google.
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No one's ever mentioned it to me - we all thought these were just aborted syncopal episodes associated with my NCS and POTS. It wasn't until Mayo when tests seemed to indicate that they might not be that I started trying to work with drs to figure it out more. However, I've run across PP on the internet and subscribe to a list serve. It's another area where a lot fits, but a lot doesn't. I've never tested high or low for potassium and I am on a high salt diet for the POTS and that doesn't seem to make me worse. (Doesn't make me better either, but for PP, I would expect it to make me worse.) Testing for PP is tough too, so I'm trying to rule out the easier things first.
Quote:
Originally Posted by Stellatum
I don't crash down--it's more of a slow collapse. I don't black out, and my "episodes" aren't nearly as severe as the ones you describe. But I think of my MG as causing two problems: the general weakness, and these "spells." It's not that they're unrelated--the spells tend to happen when I'm especially weak--it's just that they are two separate things to deal with.
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I call it a "controlled collapse." I wondered how it fits with MG. Is there normally warning for you before you have these spells?
Thanks again for your input!