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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

cosette1968 | @cosette1968 | Mar 15, 2021
In reply to @joeyd5641 "How is everyone who got a new onset or worsening of neuropathy from the vaccine doing..." + (show)
@joeyd5641

How is everyone who got a new onset or worsening of neuropathy from the vaccine doing now? I seem to be having some let up the last few days , but I am megadosing Alpha Lipoic acid, b12 and Vitalituses Palmitoylethanolamide . These have worked in the past for me also. I recommend for anyone with Neuropathy. I did report my case to VAERS. Let me know if any of you are feeling better after the neuropathy induced by the vaccine. If there are 15 or so of us here, there must be so many more suffering after the shot also. I am glad though to be protected from Covid, but holy cow there should be a warning for the neurological possiblities. Does anyone know anyone who didnt have any previous neuropathy that now has it from the shot? Regards, Joe

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About 11 years ago I had symptoms that were never diagnosed but definitely seem like sensory peripheral neuropathy. They went away spontaneously in about 3 or 4 months. After the 1st Covid 19 shot ( Pfizer), it all came back. It's been almost 3 weeks and nothing has changed, maybe a bit worse. I have an app't with my primary care but dread the response as it appears any association with the vaccine is being discounted. I can't see getting the 2nd shot with symptoms still going on but feel so unsure where that leaves me as far as the vaccine requirement is concerned. I'm hoping things will calm down but I'm not sure where to go from here. I'm thinking of trying ALA and Vitamin B12.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 15, 2021
In reply to @cosette1968 "About 11 years ago I had symptoms that were never diagnosed but definitely seem like sensory..." + (show)
@cosette1968

About 11 years ago I had symptoms that were never diagnosed but definitely seem like sensory peripheral neuropathy. They went away spontaneously in about 3 or 4 months. After the 1st Covid 19 shot ( Pfizer), it all came back. It's been almost 3 weeks and nothing has changed, maybe a bit worse. I have an app't with my primary care but dread the response as it appears any association with the vaccine is being discounted. I can't see getting the 2nd shot with symptoms still going on but feel so unsure where that leaves me as far as the vaccine requirement is concerned. I'm hoping things will calm down but I'm not sure where to go from here. I'm thinking of trying ALA and Vitamin B12.

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Hello @cosette1968, Welcome to Mayo Clinic Connect. I'm sorry to hear you had adverse side effects from the 1st Pfizer COVID vaccine. There is a way you can report an adverse side effect yourself. Here is the website where you can find out how - Report an Adverse Event to VAERS: https://vaers.hhs.gov/reportevent.html.

My wife and I both had the 1st and 2nd Pfizer vaccine but only had a sore arm from the first one and extreme fatigue the day after the second one. We also used the V-safe After Vaccination Health Checker where we registered after we received the shot and they send you a text message daily for a week to answer a few questions about any side effects and how you are doing. It's really easy to respond to the short survey via your cell phone and hopefully the data will help everyone.

V-safe After Vaccination Health Checker: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vsafe.html

Can you ask your primary care doctor what they recommend when you have your appointment?

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1 reply
lucyrennell | @lucyrennell | Mar 15, 2021

I have idiopathic small fiber neuropathy with burning, numbness, and lots of pain in my feet and legs. After I got my 2nd Moderna vaccine I had a slight headache and increased pain in my legs the next day (yesterday). So far today I think my leg pain has subsided to it's normal level (still not good but better than yesterday). Hopefully the vaccine has not had any lasting affect on my neuropathy. I am looking forward to not worrying about Covid-19 now. My neurologist approved me getting the vaccine.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 15, 2021
In reply to @lucyrennell "I have idiopathic small fiber neuropathy with burning, numbness, and lots of pain in my feet..." + (show)
@lucyrennell

I have idiopathic small fiber neuropathy with burning, numbness, and lots of pain in my feet and legs. After I got my 2nd Moderna vaccine I had a slight headache and increased pain in my legs the next day (yesterday). So far today I think my leg pain has subsided to it's normal level (still not good but better than yesterday). Hopefully the vaccine has not had any lasting affect on my neuropathy. I am looking forward to not worrying about Covid-19 now. My neurologist approved me getting the vaccine.

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Hello @lucyrennell, Welcome to Connect. Thank you for sharing your experience with the Moderna COVID vaccine. I too am looking forward to not having to worry about COVID-19 and all the fear that comes with it. Hoping the vaccine doesn't have any long term affect on your neuropathy also. I was fortunate with my small fiber neuropathy in that the COVID vaccine I took (Pfizer) had no affect other than the minor reported ones. Have you thought about reporting your side affect?

– Report an Adverse Event to VAERS: https://vaers.hhs.gov/reportevent.html.

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2 replies
lucyrennell | @lucyrennell | Mar 15, 2021
In reply to @johnbishop "Hello @lucyrennell, Welcome to Connect. Thank you for sharing your experience with the Moderna COVID vaccine...." + (show)
@johnbishop

Hello @lucyrennell, Welcome to Connect. Thank you for sharing your experience with the Moderna COVID vaccine. I too am looking forward to not having to worry about COVID-19 and all the fear that comes with it. Hoping the vaccine doesn't have any long term affect on your neuropathy also. I was fortunate with my small fiber neuropathy in that the COVID vaccine I took (Pfizer) had no affect other than the minor reported ones. Have you thought about reporting your side affect?

– Report an Adverse Event to VAERS: https://vaers.hhs.gov/reportevent.html.

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I'm not sure if the side affect was more neuropathic pain or muscular pain mixed with my neuropathy that just made my legs ache more.

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cosette1968 | @cosette1968 | Mar 15, 2021
In reply to @johnbishop "Hello @cosette1968, Welcome to Mayo Clinic Connect. I'm sorry to hear you had adverse side effects..." + (show)
@johnbishop

Hello @cosette1968, Welcome to Mayo Clinic Connect. I'm sorry to hear you had adverse side effects from the 1st Pfizer COVID vaccine. There is a way you can report an adverse side effect yourself. Here is the website where you can find out how - Report an Adverse Event to VAERS: https://vaers.hhs.gov/reportevent.html.

My wife and I both had the 1st and 2nd Pfizer vaccine but only had a sore arm from the first one and extreme fatigue the day after the second one. We also used the V-safe After Vaccination Health Checker where we registered after we received the shot and they send you a text message daily for a week to answer a few questions about any side effects and how you are doing. It's really easy to respond to the short survey via your cell phone and hopefully the data will help everyone.

V-safe After Vaccination Health Checker: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vsafe.html

Can you ask your primary care doctor what they recommend when you have your appointment?

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Thank you for the welcome and the information. I used the V-safe text message to report my symptoms. All I got was automatic replies ( even though I indicated peripheral neuropathy) with the final one telling me it's time for my second shot. I think the VAERS would be more complete but I still need to take the time to do that. I will be asking my primary care doctor what her advice is - going today. I also have a chronic form of leukemia and have a long standing app't with my oncologist tomorrow so will ask him as well. My gut feeling is that this vaccine triggered some sort of autoimmune response. It's just a gut feeling but I'm 75 years old and I know my body pretty well. My question to the doctors I will see and anyone out there who has an idea is - is there anything that can be done to calm down/reverse/halt this overactive immune response?

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 15, 2021
In reply to @cosette1968 "Thank you for the welcome and the information. I used the V-safe text message to report..." + (show)
@cosette1968

Thank you for the welcome and the information. I used the V-safe text message to report my symptoms. All I got was automatic replies ( even though I indicated peripheral neuropathy) with the final one telling me it's time for my second shot. I think the VAERS would be more complete but I still need to take the time to do that. I will be asking my primary care doctor what her advice is - going today. I also have a chronic form of leukemia and have a long standing app't with my oncologist tomorrow so will ask him as well. My gut feeling is that this vaccine triggered some sort of autoimmune response. It's just a gut feeling but I'm 75 years old and I know my body pretty well. My question to the doctors I will see and anyone out there who has an idea is - is there anything that can be done to calm down/reverse/halt this overactive immune response?

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@cosette1968, Hope you can share what you get for an answer from your doctors.

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ronmartin76 | @ronmartin76 | Mar 15, 2021
In reply to @cosette1968 "Thank you for the welcome and the information. I used the V-safe text message to report..." + (show)
@cosette1968

Thank you for the welcome and the information. I used the V-safe text message to report my symptoms. All I got was automatic replies ( even though I indicated peripheral neuropathy) with the final one telling me it's time for my second shot. I think the VAERS would be more complete but I still need to take the time to do that. I will be asking my primary care doctor what her advice is - going today. I also have a chronic form of leukemia and have a long standing app't with my oncologist tomorrow so will ask him as well. My gut feeling is that this vaccine triggered some sort of autoimmune response. It's just a gut feeling but I'm 75 years old and I know my body pretty well. My question to the doctors I will see and anyone out there who has an idea is - is there anything that can be done to calm down/reverse/halt this overactive immune response?

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Hello,

Post Vaccination Neurological Syndrome “Moderna”

Symptoms:

Peripheral Neuropathy noted hours after 1st Vaccine. numbness in left foot, shin, pin pricks in fingers, trunk, and seat of pants. Neurological itching in face and notrils (comes and goes) yesterday had significant weakness in left arm and left leg (resolved within hours). Muscle twitches in hands and above left knee ( random). My balance and coordination is normal.

My neurologist advised that the process is to monitor symptoms. If the neurological symptoms present with weakness, imbalance, or just widespread symptoms.

They will do the following: spinal tap (to rule out GBS Syndrome and Tranverse Myelitis, CT of the spine, MRI of the Brain.

Treatments: IVIg treatment to stop or slow progression, and plasmapheresis to remove the antibodies from the blood. We are all hoping that this will resolve on it's own.

I have been prescribed gabapentin that has been very effective on treating the neurological sensation symptoms.

I am day (7) post-vaccination with neurological complications.

Plan: monitor, and if it gets worse, return to the emergency room for admission.

REPLY
helennicola | @helennicola | Mar 15, 2021
In reply to @cosette1968 "Thank you for the welcome and the information. I used the V-safe text message to report..." + (show)
@cosette1968

Thank you for the welcome and the information. I used the V-safe text message to report my symptoms. All I got was automatic replies ( even though I indicated peripheral neuropathy) with the final one telling me it's time for my second shot. I think the VAERS would be more complete but I still need to take the time to do that. I will be asking my primary care doctor what her advice is - going today. I also have a chronic form of leukemia and have a long standing app't with my oncologist tomorrow so will ask him as well. My gut feeling is that this vaccine triggered some sort of autoimmune response. It's just a gut feeling but I'm 75 years old and I know my body pretty well. My question to the doctors I will see and anyone out there who has an idea is - is there anything that can be done to calm down/reverse/halt this overactive immune response?

Jump to this post

Hello Cosette, I have SFN and also had an increase in my symptoms after my 2nd Pfizer vaccine; it is a little over a month now and I feel almost back to pre vaccine level except for the increased tinnitus so I would say give it some time, and I bet you’ll have an experience similar to mine. I reported on both systems and V Safe texts regularly. Helen

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1 reply
ronmartin76 | @ronmartin76 | Mar 15, 2021

That is good to hear! Every day I am up and down with this neuropathy and didn't know what to expect. Please keep me posted on your progress.

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