Anyone had a problem with neuropathy after receiving the vaccine?

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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Profile picture for centre @centre

Although fully vaccinated, staying out of stores, using Walmart pick-up into my trunk for groceries, pharmacy delivery for meds, curbside pick-up to back seat for restaurant food now and then, and faithful masking/distancing, no visiting indoors- I got break-through COVID- sick, sick, sick. Luckily was eligible for IV monoclonal antibodies, got better fast. Gave it to my husband, despite isolation and all precautions, he was also eligible also for the IV, got it on Day 2, symptoms very mild.
In our area now, the IV antibiotics are very precious- my rheumatologist told me 2 wks ago while at appt, that if you are eligible, you go into a lottery pool, if you are picked, you have to go to the main hospital of the health system (2 hour drive away) to receive the IV. Maybe check how it is in your area before declining the booster. CDC/my PCP says you have to wait 90 days after IV treatment to receive booster, we’re signed up for next week.

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Thank you for sharing!

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Profile picture for lisa53 @lisa53

Sorry to write you two replies but I wanted to add that all of my doctors believed me immediately about the flares - so that was good. As a person who struggled for years to get to a diagnosis, I am grateful for that. I can imagine many will not get the support of their providers.
I reported my symptoms to my immunologist, PCP, the CDC (I signed up for that after test survey), my pharmacist, and The Immune Deficiency Foundation. I felt it important to share my experience for that very reason - so many do get doubted.

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Love the metaphorical spin! Like you, some of my symptoms flared after the shots, they’ve reduced some. Although the numbness in my extremities continues to spread. My neurologist recognized my symptoms as a Sjogren’s flare. I’m glad you’re doctors recognized yours as a flare. I’m unfortunately reluctant to get a booster because
of this.

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Profile picture for ninette @ninette

Hi, I'm Ninette from Antwerp (Belgium). I have SFN after a spinal stroke in 2018 but had learned to live with the pain more or less. Then after my first Moderna shot in April of this year, I developed leg & feet cramps , SFN got a lot worse and it lasted for 4 weeks. I didn't know Moderna was the cause. A month later, a week after my second dose, the same thing happened and now it lasted 5 weeks. I started to see the link. Almost 3 weeks ago I had my Moderna booster and guess what... the cramps and nerve pain (and even bladder issues) are back in full effect. I wonder for how long this time around. Of course this is still preferable to getting Covid, but I wish there would be more research into this and it would be better known (preferably without scaring the hesitating people away) so we can be reassured that this is 'only' temporary and without further damage. Even doctors don't know about this, they think I'm overreacting (well, my nerves sure are). Not really looking forward to shot nr 4- which surely is in our future somewhere. These are strange times to live in!

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How soon after your vaccinations did your symptoms worsen?

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Between 5 and 7 days- don't remember after the first shot, as I didn't put 1+1 together then. Now watching like a hawk though.

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My neuropathy gog worse after the second Moderna vaccination. Much worse.

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Profile picture for kbirchem @kbirchem

My neuropathy gog worse after the second Moderna vaccination. Much worse.

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I’m so sorry to hear that. I haven’t been vaccinated yet because I am afraid of any neurological side effects. I have so many health conditions.
Have you talked to your doctor?

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Profile picture for athenalee @athenalee

Love the metaphorical spin! Like you, some of my symptoms flared after the shots, they’ve reduced some. Although the numbness in my extremities continues to spread. My neurologist recognized my symptoms as a Sjogren’s flare. I’m glad you’re doctors recognized yours as a flare. I’m unfortunately reluctant to get a booster because
of this.

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My symptoms are finally all flared down. Ironically, just as they are urging us all to get boosters.
I told my husband maybe I will be able to tell when it is booster time by my neuropathy. 🙂
I also feel like taking a hard pass on getting a booster. I simply do not know what to do. I wrote the Immune Deficiency Foundation to tell them that the flare had passed and while I was at it I sent them the links someone posted above. They sent me two more in return, so we are not alone, my friend. We are not alone.
All that said, the risk of the virus - or horrors, long COVID - are very real. It really is a dilemma.
Good luck to you.

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Profile picture for nj003 @nj003

I’m so sorry to hear that. I haven’t been vaccinated yet because I am afraid of any neurological side effects. I have so many health conditions.
Have you talked to your doctor?

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Hello @kbirchem and welcome to Mayo Clinic Connect. Thanks for being vulnerable and sharing your thoughts and concerns. So many other members can relate, especially if they are at a place in their life where they are also facing multiple health conditions.

I wonder if you've taken a listen to podcasts from Dr. Poland. They have truly been an evolution of all things COVID and vaccines as the world quickly learns about each new development. Dr. Poland has a really great way of sharing what can be complex information on this topic in a way that is easy to digest. As you explore what makes sense for you and weigh the pros and cons, I thought this information may be helpful. Go to the link below and use the search box on the upper right using "Dr. Poland": https://connect.mayoclinic.org/newsfeed/

If you knew you wouldn't have adverse side effects, would you wish to be vaccinated?

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Profile picture for Amanda Roe @amandajro

Hello @kbirchem and welcome to Mayo Clinic Connect. Thanks for being vulnerable and sharing your thoughts and concerns. So many other members can relate, especially if they are at a place in their life where they are also facing multiple health conditions.

I wonder if you've taken a listen to podcasts from Dr. Poland. They have truly been an evolution of all things COVID and vaccines as the world quickly learns about each new development. Dr. Poland has a really great way of sharing what can be complex information on this topic in a way that is easy to digest. As you explore what makes sense for you and weigh the pros and cons, I thought this information may be helpful. Go to the link below and use the search box on the upper right using "Dr. Poland": https://connect.mayoclinic.org/newsfeed/

If you knew you wouldn't have adverse side effects, would you wish to be vaccinated?

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Ni way !!!

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How does .Mayo clinic treat peripheral neuropathy . The Fsrgo VA just wants to throw
More meds at me .

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