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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@lk61

I’m curious as to why your neurologist recommends stopping the B vitamins. Mine said the exact opposite. However I don’t have much faith in my neuro. Everything I have figured out in this fiasco has mainly been on my own with him just along for the ride. I do take alpha lipoic acid and you will find many others here who do as well. I don’t have much of an opinion as to whether it’s helping me or not. And BTW our stories are very similar except that my symptoms started immediately after the first shot. I have now had a total of 3 so obviously I am not an anti-vaxxer either.

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My doctor told me to continue the B12, though my levels are normal and I don't think that's the issue. She said some B vitamins, I think it was B6, can actually increase tingling. So, I just stopped taking the multi B and continued with the B12. So, we'll see.

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My SFN has definitely gotten worse after the vaccines (Moderna) and the booster (Pfizer).

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Hi everyone.
I am hoping some of you lovely people might be able to help.
My Mum has to have open heart surgery next week, and the hospital has a strict policy around visitors being double vaccinated.
I cancelled my vaccination appointment because of my fears that my SFN would get worse. As a consequence, I am not permitted to visit Mum.
I am applying for a temporary exemption to be filed with the Australian government.
I am seeking communication with people who have had the link between worsening of neuropathy symptoms and vaccination confirmed if not suspected with their treating doctor.
The criteria for formal exemption in Australia are very narrow, so I have to put up a persuasive argument around balance of probabilities re this link. Because all of this is new, there is no substantial body of evidence that definitively shows a causal connection.
I can leave my email here but am not sure what the protocol is regarding that.
I appreciate any feedback.
Thanks,
Regards,
Sasha

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@saski

Hi everyone.
I am hoping some of you lovely people might be able to help.
My Mum has to have open heart surgery next week, and the hospital has a strict policy around visitors being double vaccinated.
I cancelled my vaccination appointment because of my fears that my SFN would get worse. As a consequence, I am not permitted to visit Mum.
I am applying for a temporary exemption to be filed with the Australian government.
I am seeking communication with people who have had the link between worsening of neuropathy symptoms and vaccination confirmed if not suspected with their treating doctor.
The criteria for formal exemption in Australia are very narrow, so I have to put up a persuasive argument around balance of probabilities re this link. Because all of this is new, there is no substantial body of evidence that definitively shows a causal connection.
I can leave my email here but am not sure what the protocol is regarding that.
I appreciate any feedback.
Thanks,
Regards,
Sasha

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I don’t have a physician commentary, but I can tell you my neuropathy got significantly worse when I received the booster.
Good luck
Bill Wenerowicz

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@wwenerowicz

I don’t have a physician commentary, but I can tell you my neuropathy got significantly worse when I received the booster.
Good luck
Bill Wenerowicz

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Thanks, Bill.
I'm sorry to hear your SDFN got worse.
So many people here seem to be having similar experiences.
Take care.

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@saski

Hi everyone.
I am hoping some of you lovely people might be able to help.
My Mum has to have open heart surgery next week, and the hospital has a strict policy around visitors being double vaccinated.
I cancelled my vaccination appointment because of my fears that my SFN would get worse. As a consequence, I am not permitted to visit Mum.
I am applying for a temporary exemption to be filed with the Australian government.
I am seeking communication with people who have had the link between worsening of neuropathy symptoms and vaccination confirmed if not suspected with their treating doctor.
The criteria for formal exemption in Australia are very narrow, so I have to put up a persuasive argument around balance of probabilities re this link. Because all of this is new, there is no substantial body of evidence that definitively shows a causal connection.
I can leave my email here but am not sure what the protocol is regarding that.
I appreciate any feedback.
Thanks,
Regards,
Sasha

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Wished I was in Australia to visit your mum, because if she is as sweet as you are for asking this than she must be a great mum. I am double vac., w/no after affects from booster. Prayers your message reaches someone soon!

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@saski

Hi everyone.
I am hoping some of you lovely people might be able to help.
My Mum has to have open heart surgery next week, and the hospital has a strict policy around visitors being double vaccinated.
I cancelled my vaccination appointment because of my fears that my SFN would get worse. As a consequence, I am not permitted to visit Mum.
I am applying for a temporary exemption to be filed with the Australian government.
I am seeking communication with people who have had the link between worsening of neuropathy symptoms and vaccination confirmed if not suspected with their treating doctor.
The criteria for formal exemption in Australia are very narrow, so I have to put up a persuasive argument around balance of probabilities re this link. Because all of this is new, there is no substantial body of evidence that definitively shows a causal connection.
I can leave my email here but am not sure what the protocol is regarding that.
I appreciate any feedback.
Thanks,
Regards,
Sasha

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Hello @saski. I see you want to connect with others on the topic of vaccine effects so you will notice I have moved your post into an existing discussion on the topic of neuropathy and covid vaccines. Since @wwenerowicz and @melody12 have already responded to your original post and questions, I will let you reply to them.

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2 shots with booster. no issues with neuropathy post. good luck.

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@saski

Hi everyone.
I am hoping some of you lovely people might be able to help.
My Mum has to have open heart surgery next week, and the hospital has a strict policy around visitors being double vaccinated.
I cancelled my vaccination appointment because of my fears that my SFN would get worse. As a consequence, I am not permitted to visit Mum.
I am applying for a temporary exemption to be filed with the Australian government.
I am seeking communication with people who have had the link between worsening of neuropathy symptoms and vaccination confirmed if not suspected with their treating doctor.
The criteria for formal exemption in Australia are very narrow, so I have to put up a persuasive argument around balance of probabilities re this link. Because all of this is new, there is no substantial body of evidence that definitively shows a causal connection.
I can leave my email here but am not sure what the protocol is regarding that.
I appreciate any feedback.
Thanks,
Regards,
Sasha

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Dear Sasha,

I had neuropathies starting again after my first doese of Moderna. The symptoms were similar to my Guillain Barre Syndrome but much lighter ,I had 6 years ago. The symptoms looked more like SFN than GBS this time. The symptoms lasted about 10 weeks. I met with 3 neurologists, 1 immunologist and several doctors. All confirmed I SHOULD NOT receive the other vaccines. NHS ENgland took all these comments on board and issued me with an exemption.
I recently had Covid, Omicron. I had it very light but my neuropathy issues came back. Lighter than the vaccine, so far. I am still monitoring.
I hope my experience can help.
Kind regards,
Nancy

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@amandajro

Hello @saski. I see you want to connect with others on the topic of vaccine effects so you will notice I have moved your post into an existing discussion on the topic of neuropathy and covid vaccines. Since @wwenerowicz and @melody12 have already responded to your original post and questions, I will let you reply to them.

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hi Amanda!
Thank you - I'm new and thought after it may have been in the wrong section!
Thanks for all you do here–you guys are amazing!

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