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Old 02-11-2014, 05:00 PM #8
nemsmom nemsmom is offline
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Join Date: Feb 2009
Location: Oregon Coast
Posts: 503
15 yr Member
nemsmom nemsmom is offline
Member
 
Join Date: Feb 2009
Location: Oregon Coast
Posts: 503
15 yr Member
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Originally Posted by jene_rae View Post
I have also experienced temporary paralysis. It comes and goes in clusters for me since 2005. Just this year I was diagnosed with Papilladema and idiopathic intracranial pressure. I chalked it up to the pressure in my head since I couldn't find a neuro that thought I really suffered from paralysis. We also thought it was potassium related but had an episode in doctors office and they tested my levels and they were fine. So we scratched that off the list. I also have TOS, Myoclonus and dystonia. I'm currently working with doctors to see if I have both my first ribs removed if it would get rid of my neuro problems. Sorry to hear you are dealing with this as well.
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!
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