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Dr's say my cataplexy is abnormal - help

Posted by Jayde on April 30, 2002 at 22:05:15:

Hello Everyone!

Not sure when I was here last but as usual life has dealt me a bad hand or should I say narcolepsy has. I am in need of a bit o' advice.

Well, as if it need be said, I have narcolepsy. But, it is abnormal. I even perplex the Stanford Dr.s because my cataplexy is abnormal. I hit REM in less than 5 mins on my MSLT studies, I tested positive for the blood test they do to see if you carry some gene but I have normal hypocretin levels. Wit comes to cataplexy it is almost non-existant or at least hard to explain. I have dropped only once. But (embarassing as this is) the only real cataplexy that I have is after intercourse. I can't move at all - it actually gets kinda funny - but anyhow. I DO get weak when I have strong emotion - very weak. My father died 4/2/02 and I was in the hall of the ER looking on while he passed. At that very moment I felt like I was going to go down. I held in my pain, emotion and tears until I could sit down, then I just lost it. I did have muscle weakness and it was hard to walk but I did not lose complete muscle tone as the Dr.s' expect. This is what perplexes them. When I do have the emotions I just get extremely weak and have to sit down - I don't lose complete muscle tone. Anyone got any ideas or similar experiences?

Any responses greatly appreciated.

Jayde

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