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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total99 | @total99 | Jan 16, 2022
In reply to @shona "Sounds familiar. I’ve had PN for 7 years. First Pfizer I was okay within a few..." + (show)
@shona

Sounds familiar. I’ve had PN for 7 years. First Pfizer I was okay within a few weeks after second dose my flare ups are now terrible Why are these reactions to the vaccine not out there for people to see and read about before they vacc8nate ?

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I am with you. I never saw any warning about neurological side effects of vaccines.

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pacer3702 | @pacer3702 | Jan 16, 2022
In reply to @saski "I am so so sorry to hear of your terrible experience Erin. And everyone's too. My..." + (show)
@saski

I am so so sorry to hear of your terrible experience Erin. And everyone's too. My heart goes out to all of you.
But there is something so terrifying about head, neck and throat being involved. I have sfn, it seems to have gotten into my tongue and neck, and I am utterly terrified of going ahead with the vaccination which is scheduled for tomorrow (they cancelled an appt. last year). I have been to 4 doctors to try and get sensible discussion, and I have trained as a paramedic so not uninformed. But nobody listens. So I am debating whether to risk exacerbating what seems to not be abating or risk covid. It is doing my head in. Utterly terrified. Because if my tongue worsens it could be potentially very bad.
People like us don't fit into anyone's schema for proper risk assessment so we get ignored.
You are 150% right Erin- there needs to be screening that goes beyond the basic which is for an allergic reaction. This is such a dire situation.
I hope things settle down for you. I'm sending heartfelt wishes for peace and healing.
Thank you for sharing and for speaking up.

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Given the 10 months of disability I have experienced, which began 2 weeks after the first vaccine, I will not be getting the booster. One of my neurologists and my rheumatologist support that decision. I was healthy and active prior to these vaccines. I recommend that you join Neuro V Long-Haulers on Facebook. You can read about the decisions of others who faced the same dilemma. I wouldn't rush into a booster until you have time to be comfortable with your decision.

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1 reply
athenalee | @athenalee | Jan 17, 2022
In reply to @johnbishop "Here's the YouTube channel for Drbeen Medical Lectures https://www.youtube.com/channel/UCrtd2wePvAl6RN_D-9jWVQQ" + (show)
@johnbishop

Here's the YouTube channel for Drbeen Medical Lectures
https://www.youtube.com/channel/UCrtd2wePvAl6RN_D-9jWVQQ

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Thank you John and @pacer3702, the video is well done and captures what so many people are going through.

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ninette | @ninette | Jan 17, 2022
In reply to @shona "Sounds familiar. I’ve had PN for 7 years. First Pfizer I was okay within a few..." + (show)
@shona

Sounds familiar. I’ve had PN for 7 years. First Pfizer I was okay within a few weeks after second dose my flare ups are now terrible Why are these reactions to the vaccine not out there for people to see and read about before they vacc8nate ?

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I think because they are only now finding out about these side effects. This is why all of us should report them at VAERS- how else can they know? Many among us didn't put 2 + 2 together at first- only after it happened again after the second vaccination and/or the booster, the penny dropped, so to speak. Once there's enough evidence, they might be able to make a vaccine that is better for people with neurological issues.

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1 reply
gator123 | @gator123 | Jan 17, 2022
In reply to @kbirchem "I was also put on rosuvaststin by Dr Malachia Trout . Risuvastatin can take you from..." + (show)
@kbirchem

I was also put on rosuvaststin by Dr Malachia Trout . Risuvastatin can take you from pre-diabetic to diabetic. It can also raise your blood glucose. I was informed of neither. She also took me off metformun during the same time frame .

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I never had sugar issues I've been on this medication for almost 2 years now my blood sugar is going high this must be the reason I used to take pravastatin before with no problems this one has really put up my sugar

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cyp238ress | @cyp238ress | Jan 17, 2022
In reply to @total99 "How to report to VAERS?" + (show)
@total99

How to report to VAERS?

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Report it at vaers.hhs.gov

If EVERYONE that has experienced symptoms can please report, we can get someone’s attention so that this can be looked into.

This is literally ruining my life right now, and I don’t want others to unnecessarily suffer the same fate.

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1 reply
Debbie | @dbeshears1 | Jan 18, 2022
In reply to @ninette "I think because they are only now finding out about these side effects. This is why..." + (show)
@ninette

I think because they are only now finding out about these side effects. This is why all of us should report them at VAERS- how else can they know? Many among us didn't put 2 + 2 together at first- only after it happened again after the second vaccination and/or the booster, the penny dropped, so to speak. Once there's enough evidence, they might be able to make a vaccine that is better for people with neurological issues.

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You are so right, well put! The urgency of the Covid pandemic has us all having to make decisions for what we think is best, and without data, the experts can’t do proper analysis and make scientific conclusions about the vaccine. They know a lot more than us though in issuing guidance, though it’s all being fine-tuned. Sadly, we need to keep in mind that the vaccine is for the entire world population, which includes a lot of more underlying health conditions other than neurological, so the analysis on the vaccine on underlying health conditions, or new ones it could possibly create, is indeed a monster! VAERS is critical for this process!

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writer99 | @writer99 | Jan 18, 2022
In reply to @lk61 "Thank you for this link. It was strong information. Are you aware of any on-going studies..." + (show)
@lk61

Thank you for this link. It was strong information. Are you aware of any on-going studies on COVID vaccine reactions? I have registered on a website that seems to be NIH based, however it does not return any studies which match my conditions. I would like very much to be involved in any research related to this, I feel it would somehow go a little ways towards making all the fear and discomfort worthwhile. I plan to bring it up with my own neurologist at my next visit, but I have learned to have very low hopes with him. Thank you for any resources, and for the wonderful job you do with this forum.

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I am in the same position of not being able to have the vaccine, but because I have so many allergies. I can be (and have been) allergic to almost anything. Only one of my doctors believes me, the rest just think I'm neurotic. I did read a study last year from England that showed neurological damage to some people from the vaccine. Now, of course, I can't find the site, but I'm not great at searching. Where I live has a very high covid rate, and it's frightening., but I'm not willing to take the chance. Peace and healing to you, you are not alone.

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total99 | @total99 | Jan 18, 2022
In reply to @cyp238ress "Report it at vaers.hhs.gov If EVERYONE that has experienced symptoms can please report, we can get..." + (show)
@cyp238ress

Report it at vaers.hhs.gov

If EVERYONE that has experienced symptoms can please report, we can get someone’s attention so that this can be looked into.

This is literally ruining my life right now, and I don’t want others to unnecessarily suffer the same fate.

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Do you trust vaers to protect your privacy?

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1 reply
saski | @saski | Jan 19, 2022
In reply to @pacer3702 "Given the 10 months of disability I have experienced, which began 2 weeks after the first..." + (show)
@pacer3702

Given the 10 months of disability I have experienced, which began 2 weeks after the first vaccine, I will not be getting the booster. One of my neurologists and my rheumatologist support that decision. I was healthy and active prior to these vaccines. I recommend that you join Neuro V Long-Haulers on Facebook. You can read about the decisions of others who faced the same dilemma. I wouldn't rush into a booster until you have time to be comfortable with your decision.

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Hi @pacer3702, thanks so much for your reply.
I'm sorry to learn of your experience with the vaccine. I'm so utterly shocked at how many people are struggling due to this.
I haven't yet had the shot. Terrified. Having issues prior and terrified of it worsening subsequently.
It's interesting to note that most of the doctors I've spoken with have the generalist perspective, which I can understand. But the additional research is only slowly coming to light-this takes time, and then it takes more time for it to trickle down into general discourse.
Appreciate your feedback.

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