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Old 12-22-2011, 10:40 AM #1
jennyg97 jennyg97 is offline
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Join Date: Dec 2011
Posts: 8
10 yr Member
jennyg97 jennyg97 is offline
Junior Member
 
Join Date: Dec 2011
Posts: 8
10 yr Member
Default Thanks, Abby

Quote:
Originally Posted by Stellatum View Post
Meanwhile, I have a piece of general advice, which you may already be doing: keep a journal!
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 View Post
Has anyone ever mentioned hyperkalemic or hypokalemic periodic paralysis to you? If not, it may be worth typing into google.
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 View Post
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.
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!
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