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Anyone else experienced periodic episodes of paralysis? Covid related?

Posted by kimmarie67 @kimmarie67, Mar 22, 2022

Has anyone else experienced periodic episodes of paralysis?

I also have extreme fatigue, muscle weakness, neuropathy, brain fog, problems with word finding, severe headaches and shortness of breath.

MRI, CT scan, EMG, nerve conduction studies and labs are all within normal limits.

I had COVID in January 2021 and have been out of work on disability since September due to the episodes of paralysis.

I have been to the COVID Recovery Clinic at Nuvance Health and to the Neuromuscular Disease Center at UR Medicine. Nobody has answers or suggestions for treatment.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

gryphon | @gryphon | Feb 20 9:07am
In reply to @ronjar "Hi, I am a friend of lene87 who got interested in this problem complex when another..." + (show)
@ronjar

Hi, I am a friend of lene87 who got interested in this problem complex when another friend got symptoms of periodic paralysis (PP) after Covid.
PP is extremely rare, it is estimated that only around 75 ppl have it in Norway, out of a population of 5 million. It is even rarer to get it as an adult, but not impossible - there are a few studies out there of how Covid can "mess up" the ion channels in your body's membranes.
I've come across a grand total of five new possible "post Covid" PP-cases in the last year, but most likely there are many more out there, either without a diagnosis, or, especially if female, with a psych diagnosis.

Short version:
"Each type of Primary periodic paralysis (PPP) can have its own pattern of symptoms. For example:
HyperKPP:
- Attacks can be shorter and less severe, but can happen more often.
- Your symptoms can come on quickly, sometimes causing you to fall.
- Between episodes, you may have muscle spasms or trouble relaxing your muscles.

HypoKPP:
- You may have attacks every day, or you may have them once a year.
- Attacks can last anywhere from an hour to a day or two.
- Some people have weakness that changes from day to day. Later on, your muscles could become permanently weak and your symptoms could get more severe."
https://www.webmd.com/brain/primary-periodic-paralysis?

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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/

REPLY
emmylu11 | @emmylu11 | Mar 29 8:39am

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.

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kjartanls | @kjartanls | May 19 12:02pm

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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 26 12:44pm
In reply to @kjartanls "Hei @lene1987. Lurer på hvordan det går med deg. Melde privat? Jeg har datter som har..." + (show)
@kjartanls

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.

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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.

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

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