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 pacer3702 @pacer3702

Thank you for sharing this information. I had a similar adverse neurological reaction to the Pfizer vaccine and similar timeline. My diagnosis is sensory and motor peripheral neuropathy with axonal loss, but also some demyelination. My initial EMG was essentially normal, but the subsequent 3 EMGs documented the neuropathy, which was likely mediated by an autoimmune reaction to the vaccine. I have not had Covid. It would be great if you would please continue to share your treatment course. Thank you again.

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I have been experiencing pretty much non stop peripheral neuropathies that began a few hours after my fourth Pfizer booster. I have had extensive workups by my PCP, local neurologist, physiatrist, orthopedic doctor and now a neurologist at a large teaching hospital. I have had MRIs of the brain and the L spine, thoracic spine xray, c spine cat scan, 2 EMGs, dozens of blood tests. All normal except for a slightly low iron level and the expected arthritis for my age. I have tried gabapentin and steroids without relief. I have also tried what seems like a million supplements without relief. I have definitely gone down the internet rabbit hole trying to figure out what is going on with me. Let me say, I am 100% pro vaccine and in no way a conspiracy nut job. I'm an RN of 30 years and have never had a vaccine reaction like this. Thankfully, all my doctors believe me and all of them attribute these neuropathies to the vaccination, that is, an auto immune response triggered by the vaccine. Having said that, nobody seems to know how to treat this or even what is is. The closest diagnosis I have gotten is small fiber neuropathy. My neurologist does not even want to do a skin biopsy because she said it would not change treatment. Treatment at this point is pretty much nothing. I also have restless leg syndrome and am taking iron supplements and Requip, but they don't seem to be doing much for the restless legs at this point and absolutely nothing for the neuropathies. At times, I feel like my whole body is vibrating, at other times it's just a low hum. It is just crazy. My neurologist says she has seen this in post covid infection and post covid vaccination. But what"this" is, who knows. So the journey continues. I have hope and faith that someday my body will decide to return to normal. I'd love to hear if anyone has had a treatment of some sort that eliminated the neuropathies. Wishing good health and a Happy New Year to all.

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Profile picture for selene53 @selene53

I have been experiencing pretty much non stop peripheral neuropathies that began a few hours after my fourth Pfizer booster. I have had extensive workups by my PCP, local neurologist, physiatrist, orthopedic doctor and now a neurologist at a large teaching hospital. I have had MRIs of the brain and the L spine, thoracic spine xray, c spine cat scan, 2 EMGs, dozens of blood tests. All normal except for a slightly low iron level and the expected arthritis for my age. I have tried gabapentin and steroids without relief. I have also tried what seems like a million supplements without relief. I have definitely gone down the internet rabbit hole trying to figure out what is going on with me. Let me say, I am 100% pro vaccine and in no way a conspiracy nut job. I'm an RN of 30 years and have never had a vaccine reaction like this. Thankfully, all my doctors believe me and all of them attribute these neuropathies to the vaccination, that is, an auto immune response triggered by the vaccine. Having said that, nobody seems to know how to treat this or even what is is. The closest diagnosis I have gotten is small fiber neuropathy. My neurologist does not even want to do a skin biopsy because she said it would not change treatment. Treatment at this point is pretty much nothing. I also have restless leg syndrome and am taking iron supplements and Requip, but they don't seem to be doing much for the restless legs at this point and absolutely nothing for the neuropathies. At times, I feel like my whole body is vibrating, at other times it's just a low hum. It is just crazy. My neurologist says she has seen this in post covid infection and post covid vaccination. But what"this" is, who knows. So the journey continues. I have hope and faith that someday my body will decide to return to normal. I'd love to hear if anyone has had a treatment of some sort that eliminated the neuropathies. Wishing good health and a Happy New Year to all.

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Hi @selene53, Neuropathy is definitely a bummer but hope is eternal for some treatment that will provide some relief. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

There are a lot of different treatments that different people have found helpful for neuropthy symptoms including complementary and alternative ones. The Foundation for Peripheral Neuropathy has a good list that you might find helpful here - https://www.foundationforpn.org/treatments/

Hoping you find some relief and better health in 2023.

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Profile picture for John, Volunteer Mentor @johnbishop

Hi @selene53, Neuropathy is definitely a bummer but hope is eternal for some treatment that will provide some relief. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

There are a lot of different treatments that different people have found helpful for neuropthy symptoms including complementary and alternative ones. The Foundation for Peripheral Neuropathy has a good list that you might find helpful here - https://www.foundationforpn.org/treatments/

Hoping you find some relief and better health in 2023.

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Thank you!

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Profile picture for selene53 @selene53

I have been experiencing pretty much non stop peripheral neuropathies that began a few hours after my fourth Pfizer booster. I have had extensive workups by my PCP, local neurologist, physiatrist, orthopedic doctor and now a neurologist at a large teaching hospital. I have had MRIs of the brain and the L spine, thoracic spine xray, c spine cat scan, 2 EMGs, dozens of blood tests. All normal except for a slightly low iron level and the expected arthritis for my age. I have tried gabapentin and steroids without relief. I have also tried what seems like a million supplements without relief. I have definitely gone down the internet rabbit hole trying to figure out what is going on with me. Let me say, I am 100% pro vaccine and in no way a conspiracy nut job. I'm an RN of 30 years and have never had a vaccine reaction like this. Thankfully, all my doctors believe me and all of them attribute these neuropathies to the vaccination, that is, an auto immune response triggered by the vaccine. Having said that, nobody seems to know how to treat this or even what is is. The closest diagnosis I have gotten is small fiber neuropathy. My neurologist does not even want to do a skin biopsy because she said it would not change treatment. Treatment at this point is pretty much nothing. I also have restless leg syndrome and am taking iron supplements and Requip, but they don't seem to be doing much for the restless legs at this point and absolutely nothing for the neuropathies. At times, I feel like my whole body is vibrating, at other times it's just a low hum. It is just crazy. My neurologist says she has seen this in post covid infection and post covid vaccination. But what"this" is, who knows. So the journey continues. I have hope and faith that someday my body will decide to return to normal. I'd love to hear if anyone has had a treatment of some sort that eliminated the neuropathies. Wishing good health and a Happy New Year to all.

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I share a remarkably similar story. Symptoms improved for me with Lions mane, alpha lipoic acid and NAC. But still present but mild. Last night for first time terrible big toe pain, wondering if it is related to the paresthesia. Not gout. Another obstacle to maneuver…. All the best to you.

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Profile picture for selene53 @selene53

I have been experiencing pretty much non stop peripheral neuropathies that began a few hours after my fourth Pfizer booster. I have had extensive workups by my PCP, local neurologist, physiatrist, orthopedic doctor and now a neurologist at a large teaching hospital. I have had MRIs of the brain and the L spine, thoracic spine xray, c spine cat scan, 2 EMGs, dozens of blood tests. All normal except for a slightly low iron level and the expected arthritis for my age. I have tried gabapentin and steroids without relief. I have also tried what seems like a million supplements without relief. I have definitely gone down the internet rabbit hole trying to figure out what is going on with me. Let me say, I am 100% pro vaccine and in no way a conspiracy nut job. I'm an RN of 30 years and have never had a vaccine reaction like this. Thankfully, all my doctors believe me and all of them attribute these neuropathies to the vaccination, that is, an auto immune response triggered by the vaccine. Having said that, nobody seems to know how to treat this or even what is is. The closest diagnosis I have gotten is small fiber neuropathy. My neurologist does not even want to do a skin biopsy because she said it would not change treatment. Treatment at this point is pretty much nothing. I also have restless leg syndrome and am taking iron supplements and Requip, but they don't seem to be doing much for the restless legs at this point and absolutely nothing for the neuropathies. At times, I feel like my whole body is vibrating, at other times it's just a low hum. It is just crazy. My neurologist says she has seen this in post covid infection and post covid vaccination. But what"this" is, who knows. So the journey continues. I have hope and faith that someday my body will decide to return to normal. I'd love to hear if anyone has had a treatment of some sort that eliminated the neuropathies. Wishing good health and a Happy New Year to all.

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I'm sorry you're experiencing the same thing as me. My idiopathic peripheral neuropathy started in March of 22. It started 6 months after last covid vaccine. Went through all different supplements and vitamins. Gabapentin didn't do anything but make my feet swell and rash. I was prescribed amitriptyline and it definitely helps. I'm not 100%, but better than when I started. I have been to Mayo clinic for 2nd opinion. Loads of lab work, MRI, Emg, and biopsy. Emg abnormal but nothing has shown direct cause. I hope you find something that will bring you relief.

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I have rash and bumps all over my back that itch, maybe it’s the Gabapentin

Thank You for sharing

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Profile picture for miserable @miserable

I'm sorry you're experiencing the same thing as me. My idiopathic peripheral neuropathy started in March of 22. It started 6 months after last covid vaccine. Went through all different supplements and vitamins. Gabapentin didn't do anything but make my feet swell and rash. I was prescribed amitriptyline and it definitely helps. I'm not 100%, but better than when I started. I have been to Mayo clinic for 2nd opinion. Loads of lab work, MRI, Emg, and biopsy. Emg abnormal but nothing has shown direct cause. I hope you find something that will bring you relief.

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I can really relate to all that is being discussed. I had Covid and doctor wanted me to take Paxlovid due to medical and age high risk. Neuropathy first landed in my big toe, left foot. Very painful and it followed several months after my second Pfizer booster. My diet is very healthy Mediterranian (pn). I found that by drinking a glass of water the pain would go away then it hit the toe next to my big toe and I tried the same therapy. It worked and in its' own strange way it became a blessing, as I am now taking better care of my feet i.e., shoes, hydration
with lubricants and socks. Hope this simple trick works for you. It has been a very mysterious year.

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Profile picture for detc @detc

I recently, fully recovered from what was diagnosed as vaccine-induced neuropathy. I’m truly grateful to have come through it without permanent damage. I received Evusheld (monoclonal antibodies) in September and was due to receive a second dose in March. Evusheld is generally used for immunocompromised patients, but my situation qualified. I just received notice from the Cleveland Clinic last week that they are discontinuing Evusheld because it is ineffective against the current variants. That was my safe protection option, as I’m sure it was for many patients. Does anyone know whether there are any new monoclonal antibody treatments that do address the new variants? Anything in the pipeline? I would hate to think that there is nothing to replace the safe option for the large group of vulnerable, immunocompromised people. I’m not immunocompromised, but fortunately, I had Evusheld as an option. I have not been able to find anything encouraging in my research for new developments. Surely, someone must be working on an updated treatment. That’s the case with the vaccines. Has anyone heard of anything to replace the original Evusheld? My situation aside, the immunocompromised population should not be ignored. They are some of the most vulnerable of us.

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I don't know anything about another Evusheld and I'm so sorry about your awful vaccine experience. I don't know if you want to try a different kind of vaccine but it so, you might want to ask your doc about Novavax. I didn't have any problem with it.

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Profile picture for cue @cue

I don't know anything about another Evusheld and I'm so sorry about your awful vaccine experience. I don't know if you want to try a different kind of vaccine but it so, you might want to ask your doc about Novavax. I didn't have any problem with it.

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Thank you for replying to my post and suggesting an alternative. I can look into the Novavax. Appreciate it.

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Pfizer has given me everything up thru all boosters don’t know who makes Paxlovid.
Left toe hugely painful and later the toe next to it. All disappeared almost immediately after drinking a glass of water. I have a very healthy diet low in purines. I obviously also had Covid. Am reading more and more about this.

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