1. < Neuropathy

COVID vaccines and neuropathy

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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silvern12 | @silvern12 | Feb 2, 2022

Why doesn’t the pharmaceutical companies address this I find drs will not

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1 reply
pacer3702 | @pacer3702 | Feb 3, 2022
In reply to @rnlorena "I took the Modern shots in January of last year. My last one was Jan. 29th...." + (show)
@rnlorena

I took the Modern shots in January of last year. My last one was Jan. 29th. In March 6 weeks to the day from the last shot I woke up two days after I retired from nursing and had full onset of pin pricks everywhere including eyes. It took me two months to see a neurologist. I never asked about the shot because I hadn't heard anything about it. Didn't even think about it. I had EMG, lots of blood work and biopsy. The biopsy confirmed that I had SNF. Mine is idiopathic for now. I also have a burning pain in my left hand that comes and goes. It starts at the wrist then goes to between the ring and pinky finger. In April I woke up on a Sunday and my chest felt funny and I thought my palpitations were acting up. I have had them forever no big deal. Only it wasn't palpitations. My cardiologist had done some tests including a heart monitor and it showed my heart rate was 183 at its highest. I am taking metoprolol ER for the heart rate. I also saw a neuro-opthalmologist who did say the pin pricks are connected. My neurologist said it is rare for a person to wake up with full onset of what I had. I am going to see a Dr. soon whose hospital is connected to Mayo and I am going to ask for a referral to them. I saw one lady say it would be a year before an appt. But another Dr. said if the hospital is associated with Mayo I might be able to get an appt. I don't know. I saw something on here about people sending bloodwork to Germany? regarding the shots. I feel like my heart rate going up could be connected to my SNF because my cardiologist hasn't given me a reason for it being high. Thank God I had no other issues with my heart. I wonder somehow if all this is connected. I feel like it is. My pin pricks are annoying especially in my eyes and except for my heart I am luckier right now that a lot of other people who have a great many more issues than myself.

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Did your cardiologist consider autonomic neuropathy as a cause of your difficulty controlling your heart rate? Many people with SFN also have autonomic neuropathy. Hopefully, Mayo Neurology will accept your doctor's referral given the severity of your issues.
The lab in Germany is called CellTrend Labs. You would need to have blood drawn here and ship the serum sample to Germany. They provide instructions on their website.
Many people in the Neuro V Long-Haulers Facebook group are reporting vision issues after the vaccine.

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jinxedroot93 | @jinxedroot93 | Feb 3, 2022

I got the first round of the Pfizer shot last Friday. It's hard for me to tell if it actually effected my SFN or not. I had what I call a flare up the Sunday before and lost all feeling in my left leg. The day before it came back. Since then I've had a constant burning in both legs. It did effect my tachycardia. Instead of a resting heart rate of 115 it's staying around 120. As far as vision I've been having to wear my reading glasses more because of headaches and occasionally my peripheral vision is fuzzy. Hope that helps.

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selene53 | @selene53 | Feb 4, 2022

Reading through all the posts on the covid vaccine and subsequent neuropathies I am wondering:
1) Have you found that over time, weeks and months post vaccination, your symptoms diminish? Or do they intensify?

2) Have you found anything that actually eased the neuropathies....supplements, medications?

It seems most people are going through extensive testing, the majority of which is coming back normal. I myself am still waiting to get into my gp so that I can get a referral to a neurologist. I am so hesitant to tell her that these symptoms started a few hours after my fourth mRNA vaccine. It just makes you sound like a crazy person. And I am totally pro vaccine and even am a vaccinator for public health.
Thanks all.

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1 reply
sueholdenf | @sueholdenf | Feb 5, 2022

Hi, I’m sue, and new mayo this group. I was diagnosed with SFN in 2018. I am 62 years. My condition is idiopathic so they say . I am going to see another neurologist as all I have had done was a 2 nerve conduction test and I believe there is more that can be done to really confirm this diagnosis. I have managed My SFN myself without medication , which I did not want to take , yet I live with constant discomfort . My concern is this year I had two AstraZeneca vaccines without incident , but I had my booster shot , the phyzer vaccine Four weeks ago and three days later my symptoms became unbearable , the pain , tingling and even my balance are quite bad and my concern is that this may be permanent . Of course I can’t blame the phyzer vaccine , but I think it may be a possibility . Has anyone experienced this too. I would appreciate anyones imput please, Thanks

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1 reply
taml | @taml | Feb 5, 2022
In reply to @erin2288 "Hi @mrsgeorgiou - I hope you are doing well. I am late to find this group,..." + (show)
@erin2288

Hi @mrsgeorgiou - I hope you are doing well. I am late to find this group, but want to share my experience. Prior to the vaccine, I was a healthy 31-year-old with no prior health concerns. I received the first dose of Moderna and experienced an onset of neuropathy symptoms within 5 days. My doctor still recommended the second dose, and from there, my symptoms became about 100x worse. I am still struggling 9+ months later. My mom received only one dose of Pfizer and had exactly the same experience. Thankfully, she knew it would not be safe to get the second dose after seeing my experience. We are both still suffering, although it does appear that my symptoms are worse than hers. I hope this is helpful and you are doing well regardless of how you decided to move forward in your own situation.

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I had a little neck and back pain before 2Moderna shots. Then shooting ,stabbing low back, left leg, rib crushing pain, and stabbing neck pain. Didn't associate it with the shots till I got the booster and it multiplied x 100 like yours. Didn't know until Christmas my brother has the exact same thing. We both hadn't been able to sit or lift anything for months. MRIs and other tests show nothing so docs can't push you out the door fast enough. Mine seems a little better, then snaps right back to full blown. There must be help out there somewhere?
Thanks for sharing!

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taml | @taml | Feb 5, 2022
In reply to @erin2288 "Hi @mrsgeorgiou - I hope you are doing well. I am late to find this group,..." + (show)
@erin2288

Hi @mrsgeorgiou - I hope you are doing well. I am late to find this group, but want to share my experience. Prior to the vaccine, I was a healthy 31-year-old with no prior health concerns. I received the first dose of Moderna and experienced an onset of neuropathy symptoms within 5 days. My doctor still recommended the second dose, and from there, my symptoms became about 100x worse. I am still struggling 9+ months later. My mom received only one dose of Pfizer and had exactly the same experience. Thankfully, she knew it would not be safe to get the second dose after seeing my experience. We are both still suffering, although it does appear that my symptoms are worse than hers. I hope this is helpful and you are doing well regardless of how you decided to move forward in your own situation.

Jump to this post

Continued reply--
Do you think we all have something in common, blood type or something, since we're seeing the same reactions in family members. Would be nice if someone was tracking possibilities to find help ..
MAYO ????????

REPLY
1 reply
pacer3702 | @pacer3702 | Feb 5, 2022
In reply to @selene53 "Reading through all the posts on the covid vaccine and subsequent neuropathies I am wondering: 1)..." + (show)
@selene53

Reading through all the posts on the covid vaccine and subsequent neuropathies I am wondering:
1) Have you found that over time, weeks and months post vaccination, your symptoms diminish? Or do they intensify?

2) Have you found anything that actually eased the neuropathies....supplements, medications?

It seems most people are going through extensive testing, the majority of which is coming back normal. I myself am still waiting to get into my gp so that I can get a referral to a neurologist. I am so hesitant to tell her that these symptoms started a few hours after my fourth mRNA vaccine. It just makes you sound like a crazy person. And I am totally pro vaccine and even am a vaccinator for public health.
Thanks all.

Jump to this post

The good news is that most patients on Neuro V Long-Haulers are reporting improvement about 9 months after vaccination. But most don't seem to have recovered completely. I still have numbness, nerve pain, and tire easily.
What helps me the most is rest and only light exercise. Most of the adverse reactions seem to be immune-mediated. Rest helps to suppress an overreactive immune system. I had an autoimmune response to the vaccine.
I would definitely share your information with your neurologist. The neurologists are seeing many patients like us Even if yours is skeptical, she should document the association in time in your chart.

REPLY
2 replies
pacer3702 | @pacer3702 | Feb 5, 2022
In reply to @taml "Continued reply-- Do you think we all have something in common, blood type or something, since..." + (show)
@taml

Continued reply--
Do you think we all have something in common, blood type or something, since we're seeing the same reactions in family members. Would be nice if someone was tracking possibilities to find help ..
MAYO ????????

Jump to this post

Another theory is the adverse effects may be batch dependent. You can find the list at howbadismybatch com. My first Pfizer batch is listed as number 5 for associated deaths and number 14 for overall adverse events.

REPLY
1 reply
selene53 | @selene53 | Feb 5, 2022
In reply to @pacer3702 "The good news is that most patients on Neuro V Long-Haulers are reporting improvement about 9..." + (show)
@pacer3702

The good news is that most patients on Neuro V Long-Haulers are reporting improvement about 9 months after vaccination. But most don't seem to have recovered completely. I still have numbness, nerve pain, and tire easily.
What helps me the most is rest and only light exercise. Most of the adverse reactions seem to be immune-mediated. Rest helps to suppress an overreactive immune system. I had an autoimmune response to the vaccine.
I would definitely share your information with your neurologist. The neurologists are seeing many patients like us Even if yours is skeptical, she should document the association in time in your chart.

Jump to this post

Thank you for your response. That is good news, albeit a long time. I did notice that the symptoms seemed worse after walking rapidly on the treadmill, so I will take your advice and slow it down. And I certainly will share with the neurologist, if I can ever get an appointment with her. Have to go through my primary care doctor and that's 2 weeks out still. Patience.

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