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Old 02-16-2014, 10:10 PM #10
jusf jusf is offline
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Join Date: Aug 2013
Location: Liverpool, UK
Posts: 10
10 yr Member
jusf jusf is offline
Junior Member
 
Join Date: Aug 2013
Location: Liverpool, UK
Posts: 10
10 yr Member
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Quote:
Originally Posted by nemsmom View Post
Just wanted to pop in and let you know, if they suspect potassium to be an issue. It's possible to have "normal" potassium levels and still have an attack of paralysis, it only takes just the slightest shift in your normal levels for someone with hypo or hyperkalemic periodic paralysis to have an attack.

I have hypokalemic periodic paralysis and I very rarely have levels lower than the suggested normal range... Well that we know of, we don't even try to get me to the doctors during an attack now that I'm diagnosed. If you search the condition you could find things that should trigger an attack and see if you can make one happen. Things like carbs or rest after exercise and steroids all trigger attacks for me. Steroids are a BIG no-no, they put me on IV steroids for an MS attack and I ended up going to the hospital by ambulance and staying for five days. In fact, that was the only time my potassium levels were out of the "normal" range, and it was only slightly lower than the low end of normal.

I hope you all find answers. I remember the the frustration of trying to get a diagnosis. The horrible feeling you get when the doctors don't believe it's happening, you start to question yourself and wonder if it's really happening. A lot of doctors think that if they can't explain it then it's "all in your head". Well that's not true, so if they make you feel that way, find another doctor. Just keep fighting until you find your answers.

Good luck to all of you!
Hi Nemsmom, do your triggers always bring on an attack? HKPP is something I'm wondering about as it fits in many ways though not all. I'm keeping a note of food at mo and trying to reduce carbs and sugar to see if it makes any difference - suspect it won't but worth a try :-)
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