Anyone else experienced periodic episodes of paralysis? Covid related?

My husband has hupokalemic periodic paralysis, triggered by a bad bout of norovirus in 2008. It's a joke in the periodic paralysis community that if you haven't been diagnosed with conversion disorder (the go-to psychiatric disorder for doctors who can't explain physical symptoms) you don't have HKPP! Not the easiest to diagnose, but probably more common than it seems. Basically the ion channels in cells don't function properly: they open up, allows potassium in, then lock closed, trapping potassium in the cells. This paralyzes the muscle, and the rest of the body doesn't have enough potassium to function properly. If the patient drinks potassium solution (and no, bananas do NOT help), it equalizes the potassium inside and outside of the cells, allowing the ion channels to open and normal functioning to resume. Take a look at https://periodicparalysis.org/

Any updates on a potential diagnosis or current symptoms? I have Long Covid and have been experiencing episodes of temporary partial paralysis. For a long time I was attributing many of my odd symptoms to migraine aura and post exertional malaise (both of which I do experience), but I am now realizing many of my symptoms are probably actually part of whatever pathology is causing these partial paralysis episodes. They have recently been getting much more frequent and longer lasting. Any tips on types of specialists and tests to request would be greatly appreciated.

Hei @lene1987. Lurer på hvordan det går med deg. Melde privat? Jeg har datter som har ME og mye paralyser. Bor utenfor Ålesund og har gode kontakter med leger. Samler erfaringer som dine og prøver å skape forståelse.

Welcome, @kjartanls. I used Google Translate (https://translate.google.ca/) to translate your message from Norweigen to English:
ENGLISH TRANSLATION
Wondering how you are doing. Report privately? I have a daughter who has ME and a lot of paralysis. Lives outside Ålesund and has good contacts with doctors. Collects experiences like yours and tries to create understanding.

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Has your daughter been living with myalgic encephalomyelitis for long? How is she doing? What helps?

Hello,

I had covid in December 2020 and developed long covid. I also started having what I call collapses (as described by others here) in July 2022. I was sent to the Stroke team and had a brain CT, no damage so that was that. I carried on having the episodes every few months and eventually went to see my GP again who sent me to Endocrinology - no idea why! I asked to be referred to neurology but she knew better lol. That was a no, not endocrinology but very helpful consultant. She listened and agreed it sounded similar to Hypokalaemic periodic paralysis and said she'd speak to the neurology team and refer me to someone with experience of that condition. I had the appointment a few weeks ago and the doctor was very interested. I am to have genetic testing to see if I have the genes for the condition. It was so good to have someone listen and take me seriously at last. I'll add what happens when I know :).

It was interesting to read these posts. I had taken one dose of a new antiviral and was sitting on the sofa. I heard the doorbell and went to pick up the delivery on the porch. My legs weren't asleep or numb in any way when I got up, but about after walking about 12 feet, my left leg felt completely paralyzed. It didn't last more than a few minutes, but it was very scary so I didn't take that med again and haven't had that happen again. I have MCAS so I am always having weird reactions to things.

I will be LC 5 years 9/11/25.
I have symptoms very similar to yours. Diagnostics and testing show normal levels as well. Also on Fed Disability since 1/2025, but mainly for Brain Fog and Imbalance-Dizziness.

In 5 years I have only 2 or 3 random episodes of partial paralysis lasting a minute or so each. Can't lift my arm to brush my teeth; feeling like I weigh a million pounds and my legs about to give way while walking; ...

Since this was never a primary symptom and happened so infrequently I never pursued diagnosis. Had to many other things going on taking priority.

Interesting, though, that your overall LC symptoms are very similar to mine and their onset at almost the same period of time. Maybe from the same variant?

Anyway, a new piece to our puzzle. Won't it be wonderful to see the completed picture one day?

Blessings to all.