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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Guillain-Barre - (can't do the acute over the last e with this software). A French word so pronounced gi (not ji) - an - bar-eh.
You can google it, lots of info. Should have been something your doctors considered, maybe they had good reason to rule it out.
As I was reading the thread, this thought came to me as well. Many years ago, I experienced episodes of severe cataplexy, in which I would drop like a rag doll and couldn't move my extremities; just my fingers, toes, and eyelids. In all instances, extreme emotions brought them on, typically fear.I don't really know what it could be caused by, but it sounds most like this: https://en.wikipedia.org/wiki/Cataplexy
One possible cause is like the so-called sleep paralysis - the paralysis that we get when entering REM sleep is activated when conscious, a common symptom of those who suffer from narcolepsy. My first questions besides those infection related (fever, meningitis?) would be about sleep quality and rhythms, whether you take melatonin or anything else that effects sleep. Could also be somehow linked to migranes as well.
The toe thing is more difficult than the finger thing. I've had a couple of these attacks on the freeway, during those near misses when everyone slams on their brakes at the same time and you're absolutely positive you're going to hit the vehicle in front of you. I lose muscle tone in my legs and arms and slump against the steering wheel. What gets me functioning again is wiggling my fingers. Then my hands, lower arms, feet, lower legs, etc. Fortunately, it never lasted for more than about 10 seconds. Put the paralysis was instantaneous, within seconds.Interestingly for some starting to wiggle their toes is they only way they can regain functioning.
I had Guillain-Barre about 3 years ago, after a really bad gut illness. It came on gradually, just a few weeks after I recovered from the gut bug. It was severe peripheral neuropathy with some mild muscle weakness. Started in my feet and hands and moved slowly up my body. Took over six months for recovery, which wasn't 100%. Still have numbness in my feet and hands, especially my toes and fingers.Guillain-Barre has onset over days to a week or so and takes months to years to recover (if at all), it doesn't come and go rapidly like this.
Periodic paralysis is possible but they tested potassium while I couldn't move. Think that one was actually on the doctor's radar.