1. < Neuropathy
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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?

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

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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)
Profile picture for cosette1968 @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)
Profile picture for cosette1968 @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.

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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)
Profile picture for cosette1968 @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 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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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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Teresa, Volunteer Mentor | @hopeful33250 | Mar 15, 2021
In reply to @ronmartin76 "Post-Vaccination Neurological Event. “MODERNA” I am now on Day (6) of a post-vaccination neurological event. Hours..." + (show)
Profile picture for ronmartin76 @ronmartin76

Post-Vaccination Neurological Event. “MODERNA”

I am now on Day (6) of a post-vaccination neurological event. Hours after the 1st shot, I experienced numbness in my left shin and foot. Did have random pricking and skin sensations in the seat of my pants.
Now, it has spread to the right leg and moving up to the waist. I have neurological itching in my nostrils and face. I thought it was an allergy, but antihistamines were ineffective. Gabapentin was effective pointing to a Neurological origin. I do have pinpricks in my fingers, feet, and lower Trunk (random). ED evaluated me and advised if I begin to lose balance, bladder or Bowel control to return to the emergency department without delay. I see the Neurologist at Jefferson Hospital this Friday. They are hoping this will resolve but will keep close surveillance on the issue just in case it morphs into a more insidious issue.

Will keep you posted

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Did you have neuropathy prior to the vaccination, @ronmartin76?

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geegie | @geegie | Mar 15, 2021
In reply to @johnbishop "Hello @lucyrennell, Welcome to Connect. Thank you for sharing your experience with the Moderna COVID vaccine...." + (show)
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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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Hello all, I have arthritis, small fiber polymyopathy, kidney disease and Lupus. A week ago I had my second moderna vaccination. Except for some tiredness the first couple of days after the second injection I had no problems at all. Hope you all have the same experience without any problems. Rose

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steeldove | @steeldove | Mar 15, 2021

@johnbishop Following the second dose of Moderna vaccine, I had the usual sore arm, but also experienced crushing fatigue for a couple of days.

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John, Volunteer Mentor | @johnbishop | Mar 15, 2021
In reply to @steeldove "@johnbishop Following the second dose of Moderna vaccine, I had the usual sore arm, but also..." + (show)
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@johnbishop Following the second dose of Moderna vaccine, I had the usual sore arm, but also experienced crushing fatigue for a couple of days.

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@steeldove Yikes! Glad the fatigue was only one day for me.

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cosette1968 | @cosette1968 | Mar 15, 2021
In reply to @helennicola "Hello Cosette, I have SFN and also had an increase in my symptoms after my 2nd..." + (show)
Profile picture for helennicola @helennicola

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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Thank you for your reply. That is very encouraging news. I wish this happened ( if it was to happen at all) with the 2nd shot and not the 1st because I just can't see getting the 2nd - especially if I am still experiencing all these symptoms. I saw my primary care doctor who also felt things would "calm down" at some point in the not too distant future so you are both telling me similar things. She didn't advise me to get the 2nd dose if I still had symptoms. She thinks down the road I could get the 2nd dose or even J&J as an alternative - which I found interesting.

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avmcbellar | @avmcbellar | Mar 16, 2021

Hi Linda and Hank @jesfactsmon I was sipping on Shifa tea for my headache today and thought of you both. Haven’t heard from you in a while. I miss receiving your discussions on Connect. I hope all is well after the covid vaccines. Best wishes. Toni

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