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.

I'm so sorry to hear of the severity of your post COVID symptoms. I'm 18 months in and struggling with all the symptoms you have listed (and more). Diagnostics all coming back within normal ranges. I never had complete paralysis but had multiple episodes of sudden onset weakness - to the point, for example, of barely being able to lift my arm to brush my teeth or open the refrigerator door or feeling like my body was about to crumble to the floor. These episodes were few for me and only lasted 1-2 minutes. Never an explanation, though. I am accepted into the recovery programs at my local Post COVID Recovery Clinic and Mayo Clinic-Rochester, MN. Just getting started, but hopeful. The answers to our condition are so very hard to find. Hoping and praying for your recovery, with or without medical intervention.

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@kimmarie67, I'll add my welcome. Can you describe your paralysis episodes? Is your whole body immobilized? Or is it more like what @jrg200911 describes - sudden onset weakness that makes it hard or impossible to move an arm or leg or part of your body?

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@colleenyoung

@kimmarie67, I'll add my welcome. Can you describe your paralysis episodes? Is your whole body immobilized? Or is it more like what @jrg200911 describes - sudden onset weakness that makes it hard or impossible to move an arm or leg or part of your body?

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Whole body immobilized. I can only blink my eyes. My first episode sent me by EMS to the ED. They thought I had a stroke with locked in syndrome. However CT and MRI were both WNL. Some days I have multiple episodes (4 is the max) or I can go just over a week without one. They happen at all hours and when I am awake. I have noticed a prodrome of an electrical shocky/tingling feeling in my legs and arms with weakness. Before the first episode of paralysis I had multiple episodes similar to what @jrg200911 describes. Episodes typically last 20 min to 4 hours. The longest was 10 hours.

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@kimmarie67

Whole body immobilized. I can only blink my eyes. My first episode sent me by EMS to the ED. They thought I had a stroke with locked in syndrome. However CT and MRI were both WNL. Some days I have multiple episodes (4 is the max) or I can go just over a week without one. They happen at all hours and when I am awake. I have noticed a prodrome of an electrical shocky/tingling feeling in my legs and arms with weakness. Before the first episode of paralysis I had multiple episodes similar to what @jrg200911 describes. Episodes typically last 20 min to 4 hours. The longest was 10 hours.

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@kimmarie67 and @jrg200911 , I just found this one case study from 2021 that may be of interest to you.
- COVID-19 presenting as acute transient flaccid limb paralysis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8144799/

Note, this patient had a known history of hypokalemic periodic paralysis before getting COVID infection. His muscle weakness promptly reversed with potassium supplementation. It may be something to ask your doctor about.

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Thank you. I have spoken to my Dr about periodic paralysis. He does not believe that is the issue.

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@colleenyoung

@kimmarie67 and @jrg200911 , I just found this one case study from 2021 that may be of interest to you.
- COVID-19 presenting as acute transient flaccid limb paralysis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8144799/

Note, this patient had a known history of hypokalemic periodic paralysis before getting COVID infection. His muscle weakness promptly reversed with potassium supplementation. It may be something to ask your doctor about.

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Yes, thank you. Since I have had no more than 5 total episodes lasting only minutes each time, my doctors felt no need to pursue further testing. All labs have returned my potassium levels WNL.

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@kimmarie67

Whole body immobilized. I can only blink my eyes. My first episode sent me by EMS to the ED. They thought I had a stroke with locked in syndrome. However CT and MRI were both WNL. Some days I have multiple episodes (4 is the max) or I can go just over a week without one. They happen at all hours and when I am awake. I have noticed a prodrome of an electrical shocky/tingling feeling in my legs and arms with weakness. Before the first episode of paralysis I had multiple episodes similar to what @jrg200911 describes. Episodes typically last 20 min to 4 hours. The longest was 10 hours.

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@kimmarie67
Hello!
I am a 34 year old woman from Norway.
I'll try to keep this as short as possible, and I apologize for any typos:)

I had covid-19 in April 2020 and developed long covid with all kinds of symptoms lasting over a year, then a year and a half... Then I got my first vax (Phifer) in August 2021. Slowly got even more fatigued again, dizzy to the point of fainting. The I got my second in September, a month after the first, but this one was Moderna.
I slowly started to notice something happening in my body. Kind of hard to explain.. I was working but barely getting through each day. I had to ask for 50% sick leave in the end of August.
Then something happened in the middle of October (21). One morning I got to work, got cold sweats, dizziness, low pulse, tingling in my fingers and toes. I sat down, my boss tried to talk to me, but I was totally desoriented and confused and slow. Then suddenly my legs and hands wouldn't work. I lost control over my limbs. My tongue and lips were completely numb, I couldn't even stand up on my own.
I got help from my first customer (I am a hairdresser) for the day who just happened to be a doctor (lucky me!).
She drove me to the doctors center and took an ecg and blood tests. Because of the symptoms she suspected it may have had something to do with hyperkalemia, because I had elevated potassium ever since covid in 2020. (4.8/4.9) and the symptoms I presented.
The paralyses let go slowly and I could walk again within about 45minutes. So they sent me home.. The ecg was at that time normal, a bit irregular, but didn't present any hyperkalemic changes at that time.
The blood test takes a bit of time to get answers for. So at 8pm the same day the A & E called me and asked how I was feeling.. By then I had just been home and laid in the couch drinking water. I also had diarea the same morning btw, that is also a symptom for Hyperkalemia.
The test that morning came back at 8.0 (!!). They drove me to the hospital for checkup, but by then the level was down to 4.8 again. The doctors didn't believe me because the potassium levels can sometimes come back too high due to pseudohyperkalemia.
But since then a lot has happened.
So long story short(er), ever since that time I have had paralyses and spiking potassium levels after extersion forcing me to not exercise, be cold, eat high potassium foods, not get too hungry, and a lot of things to try to minimize the episodes. At worst I had them once or twice a day.. The doctors still haven't found of what is causing this.
My kidneys are normal, all hormones etc etc. I am waiting for a genetic test to determine if this is a rare condition called Hyperkalemic periodic paralysis.
I also get serious changes to my ecg when this is happening.
At one point I thought I am not going to survive this. But I won't give up!
I am certain either covid or the vaccines have triggered this condition in my body. I was perfectly healthy and active before.
I would like to get in tough with others who ate experiencing similar things after covid or vax.
Maybe we can help each other in some way? I have talked to two other individuals that have the same thing, in different strengths and frequency.

I can tell you more about this, just ask me anything! I can also update when or if I get any responses from the doctors.
I have a feeling they have kind of given up on me because they can't figure out what's wrong.

Please get back to me as soon as you can, all of you that may know some more about this phenomenon!

Kind regards, Lene

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@jrg200911

I'm so sorry to hear of the severity of your post COVID symptoms. I'm 18 months in and struggling with all the symptoms you have listed (and more). Diagnostics all coming back within normal ranges. I never had complete paralysis but had multiple episodes of sudden onset weakness - to the point, for example, of barely being able to lift my arm to brush my teeth or open the refrigerator door or feeling like my body was about to crumble to the floor. These episodes were few for me and only lasted 1-2 minutes. Never an explanation, though. I am accepted into the recovery programs at my local Post COVID Recovery Clinic and Mayo Clinic-Rochester, MN. Just getting started, but hopeful. The answers to our condition are so very hard to find. Hoping and praying for your recovery, with or without medical intervention.

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Please read my response to the original message! <3

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@jrg200911

Yes, thank you. Since I have had no more than 5 total episodes lasting only minutes each time, my doctors felt no need to pursue further testing. All labs have returned my potassium levels WNL.

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My potassium levels are also in "Normal" ranges between my episodes of hyperkalemia. My paralysis attacks can last from half an hour to several hours. My heart is also gotten very sensitive to the changes and it shows on my advanced ecg monitor on my Samsung active watch. Even the doctors say it is impressive, and resembles the ecgs they take in the hospital. And is consistent with severe hyperkalemia at worst.
The only thing that helps me get the levels down again is sugar and rest.
When I was admitted to the hospital they gave me intervenous insulin and calsium to protect the heart.
Please go read my answer to the original message!
It is very interesting to find others that may also have developed similar conditions after covid of the Vax ­čś«

I have 4.7- ish when I feel normal and don't have any numbness or paralysis, but the worst episode they have measured is 7.3, 8.0, 7.8, 7.5 etc.. At home when I haven't called 911 I have probably been a lot higher as well.
It's only lucky that I am still alive. Must have a very strong heart! Thank God.

Please get back to me when you see this.

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@lene1987

Please read my response to the original message! <3

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I am heading to the Mayo Clinic Post COVID Recovery department @ Rochester, MInnesota in May for further diagnosis and development of a personalized treatment/therapy plan. Even though my sudden onset episodes of extreme weakness were few, I will be sure to ask about them. I will try to remember (#covidbrainfogisreal) to update here anything I learn. Prayers for answers for all of us!

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