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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Moderator
Amanda Roe | @amandajro | Mar 17, 2021

Hello @hebcrowell and welcome to Mayo Clinic Connect. I am glad to see you reached out to members in this discussion regarding your symptoms. It is always helpful to realize you are not alone or imagining things.

Have you considered journaling your experience until either things improve or in the event that you need to make an appointment with your neurologist?

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1 reply
mawagner13 | @mawagner13 | Mar 18, 2021
In reply to @hebcrowell "I have small fiber in my feet which has been mostly dormant but have developed new..." + (show)
@hebcrowell

I have small fiber in my feet which has been mostly dormant but have developed new aggressive flare in same left arm I got the shot in by about day 3. I received Pfizer. It's been 10 or 11 days now and it's creeping into my right hand. Came here to see if it was a coincidence or something others are experiencing.

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Hello. I’m sorry to hear this. Yes, several in the group have had the same reaction. My neuropathy was also dormant but emerged with a vengeance all over my body hours after the first dose of moderna. That was Jan 5 and it hasn’t resolved but it’s not as constant as it was. I didn’t get the 2nd dose. I encourage you to report your reaction in the vaers system. Physicians are reluctant to consider a causal relationship because it’s not a reported or expected side effect. Best of luck.

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3 replies
hebcrowell | @hebcrowell | Mar 18, 2021
In reply to @mawagner13 "Hello. I’m sorry to hear this. Yes, several in the group have had the same reaction...." + (show)
@mawagner13

Hello. I’m sorry to hear this. Yes, several in the group have had the same reaction. My neuropathy was also dormant but emerged with a vengeance all over my body hours after the first dose of moderna. That was Jan 5 and it hasn’t resolved but it’s not as constant as it was. I didn’t get the 2nd dose. I encourage you to report your reaction in the vaers system. Physicians are reluctant to consider a causal relationship because it’s not a reported or expected side effect. Best of luck.

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Thank you! Guess it's time to find a new neurologist.

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hebcrowell | @hebcrowell | Mar 18, 2021
In reply to @amandajro "Hello @hebcrowell and welcome to Mayo Clinic Connect. I am glad to see you reached out..." + (show)
@amandajro

Hello @hebcrowell and welcome to Mayo Clinic Connect. I am glad to see you reached out to members in this discussion regarding your symptoms. It is always helpful to realize you are not alone or imagining things.

Have you considered journaling your experience until either things improve or in the event that you need to make an appointment with your neurologist?

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Good suggestion. My neuro left town so I will do that while I get in line for a new doctor. Thank you!

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tigreyes2004 | @tigreyes2004 | Mar 18, 2021
In reply to @mawagner13 "Hello. I’m sorry to hear this. Yes, several in the group have had the same reaction...." + (show)
@mawagner13

Hello. I’m sorry to hear this. Yes, several in the group have had the same reaction. My neuropathy was also dormant but emerged with a vengeance all over my body hours after the first dose of moderna. That was Jan 5 and it hasn’t resolved but it’s not as constant as it was. I didn’t get the 2nd dose. I encourage you to report your reaction in the vaers system. Physicians are reluctant to consider a causal relationship because it’s not a reported or expected side effect. Best of luck.

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How do you keep your Neurpathy under control? Nothing is helping me & I was just wondering what you were doing to feel better? Thanks
Genie

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1 reply
sunnyflower | @sunnyflower | Mar 19, 2021
In reply to @ess77 "Hello, @sunnyflower, @avmcbellar, @athenalee, @artscaping , @everyone else....I'm so sorry you've had a tough response to..." + (show)
@ess77

Hello, @sunnyflower, @avmcbellar, @athenalee, @artscaping , @everyone else....I'm so sorry you've had a tough response to the 2nd shot, Sunny. I did too. I wrote about it in Feb after I got the 2nd Moderna shot and had a very rough 18 hours. It began after about 4-6 hours, with extreme fatigue, all over pain, bones/muscles/head......everything hurt pretty badly. I was purely miserable for 18 hours, with a fever for several hours. I got so ill I went back to bed, which I never do unless I'm really not feeling well. I slept for several hours, sweat profusely and woke up fever free and almost pain free. It took me a day or so to regain my strength and be able to function somewhat normally.

I hope you have far less reaction and it gets better NOW! No fun, but I reminded myself this was for my health, my body was making antibodies to help me stay healthy and beat any possible Covid19 infection. That thinking helped me get through those hours. My good friend just got her 1st shot, Phizar, has some arm discomfort, feels drained and fatigued, resting, no fever. I had no 1st shot reaction.

Sunny....I will love you forever, my friend! I just ordered and have ready to put together my very own posh, hot pink, rollater w/black and white zebra pattern seat bag and back bag!!!! I've been looking for this for years!!!! I refused to use a walker forever, but when forced to get one, it had to be red. all they had was burgundy, and now everyone has one.....and it's boring~ I'm up town, hot mama now, my friend. Love it. AND, got glasses w/prisms for double vision. Kate Spade, big black w/red roses, sunglasses.....Tiffany black weird shape with silver glitter on bottom and gold arms. Am I investing in a fun rest of my life? I had to let you know since we seem to be sisters in bling!

Blessings, feel well and be safe and look stunning as we toddle around! elizabeth

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Hello Elizabeth, so sorry it took me so long to get back to you! 😔 I've now had over 600 emails from the Neuropathy group. I 'm also a member of other groups too.

I' m so happy to hear you bought and love your new walker!! I hope it makes your life easier and more safe as you will be lifting it. Pretty amazing only 11#! Yep, now you will be glam and hip as you roll in style!

The akate Spade sunglasses sound very glam

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1 reply
sunnyflower | @sunnyflower | Mar 19, 2021
In reply to @sunnyflower "Hello Elizabeth, so sorry it took me so long to get back to you! 😔 I've..." + (show)
@sunnyflower

Hello Elizabeth, so sorry it took me so long to get back to you! 😔 I've now had over 600 emails from the Neuropathy group. I 'm also a member of other groups too.

I' m so happy to hear you bought and love your new walker!! I hope it makes your life easier and more safe as you will be lifting it. Pretty amazing only 11#! Yep, now you will be glam and hip as you roll in style!

The akate Spade sunglasses sound very glam

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Battery dying, more later

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mawagner13 | @mawagner13 | Mar 19, 2021
In reply to @tigreyes2004 "How do you keep your Neurpathy under control? Nothing is helping me & I was just..." + (show)
@tigreyes2004

How do you keep your Neurpathy under control? Nothing is helping me & I was just wondering what you were doing to feel better? Thanks
Genie

Jump to this post

I was on gabapentin 2 yrs ago when it first started after taking levaquin. But I mega dosed b12 via injections for 3 mo. Also took numerous other supplements. The regimen was put together by a physician knowledgeable about levaquin toxicity. I was able to stop the gabapentin and it was mostly dormant. But after getting the covid jab I’m back on gabapentin and supplements again. Hoping to get off the gabapentin in time.

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bustrbrwn22 | @bustrbrwn22 | Mar 19, 2021
In reply to @lacy2 "DNA Oh its another bed day for me today sorting some papers and I came across..." + (show)
@lacy2

DNA
Oh its another bed day for me today sorting some papers and I came across my DNA TEST REPORTI had done a few years ago: my forgetfulness no longer surprises me.
So I was wondering if in this Group or another Group has anyone else had their DNA done as it relates to medications?
They cannot do all meds as too many but quite a few; then I read on another page my DNA code and some other things. It was a couple hundred dollars and just a swab on cheek at Pharmacy.
So; about 10 yrs ago Neurologist prescribed Amitriptyline ..I took one before bed an next morning was a basket case with cotton mouth, alone as husband at work and it was bad enough I didnt take any more. Just noticed on "Major gene-drug interaction" on this DNA Report, out of the five Psychiatry drugs they say I have "Major gene-drug interaction" to is Amitriptyline!!!
Thing is I had this test done and put it away, so no one has a copy, my old doctor, the emerge dept., no one: who would really have time to look at it?
So I think, and at the time thought, it was a good thing to find out whether I had major, moderate or minimal gene-drug interaction but doesn't help me when Report is sitting in a drawer at home!
Anyone else had this done? Was it useful? June

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@lacy2 Hi, June - do you remember where you ordered this DNA test from that tests your reactions to medications? I think it would be good for me to do this. Thanks - Jen

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Valerie | @lacy2 | Mar 19, 2021

@bustrbrwn22 Hello Was end of 2017 so presume they are still in business and it (mouth swab) was done by new pharmacist. They cannot or do not test every single medication but did do a lot. Am sure many other companies that do it.
This one was ONEOME AND RIGHTMED Comprehensive test. Ordering facility: ProZed Pharmacy Solutions Inc. I got it out recently and dusted it off.. as I think I mentioned before, almost forgot about it, as no one I saw and mentioned it to seemed interested! A company here is trying to get hospitals to have this information on patients but I cant see that ever happening due to the sheer millions of people, but I wonder if one day we will carry around a usb stick or such with medical information on it? This report listed drugs under: major, moderate and minimal gene-drug reaction... although the lists of drugs under each section was/is easy to comprehend, another section wasn't/isn't so if you do go ahead with having it done, I would suggest making sure they allot enough time to go over the report with you (in this case my pharmacist).
Cost at the time was a couple of hundred dollars. I noticed recently that I can access my information on line but haven't tried before but will today.
They have a lot of icons next to the drugs and I notice one icon suggests additional testing according to FDA labeling, so this company is probably in USA.
I have been negligent in not mentioning this dna to all drs. I see but that happened because when i first mentioned that i had it, no none seemed interested! I am going to give it another kick at the can today and contact the company..... good luck with it.

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