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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detc | @detc | Jun 26, 2022
In reply to @colleenyoung "Welcome @detc, I moved your message about vaccine-induced neuropathy and alternatives to the booster to this..." + (show)
@colleenyoung

Welcome @detc, I moved your message about vaccine-induced neuropathy and alternatives to the booster to this existing discussion so you can connect with others.
- COVID vaccines and neuropathy https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/

You might also be interested in learning more about Evushield in this related discussion:
- Have you been able to get Evusheld? Or find where it is offered? https://connect.mayoclinic.org/discussion/evusheld-2/

Jump to this post

Is my question now on both group discussions? Ultimately it’s about Covid but the neuropathy is also a major concern. I would think that I might get the best input by being in both groups. Thank you if that’s what you have facilitated. Also, thank you for the Evusheld link.

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selene53 | @selene53 | Jul 7, 2022

Update: Well, 6 months after my numbness and tingling began after my 4th mRnA shot the symptoms are still continuing. Today was a particularly bad day with the neuropathies. I felt like my legs were vibrating and at the same time really heavy. My doctors here have given up on me, I think. I'm scheduled to have a brain MRI in a few weeks, but the neurologist said "Probably won't tell us anything". The neurologist that was recommended in Denver is scheduled 6 months out and then there is a huge waiting list for 2023. I said to the scheduler, "So, in other words, hopeless". She said, "Pretty much for new patients." I asked the one neurologist in my town about a skin biopsy for small fiber neuropathy diagnosis and she said, "We don't do that here". So , Denver seems hopeless and now I'm considering Mayo Clinic in Scottsdale, but don't even know where to begin to find a doctor there. Open to any suggestions. Thanks in advance.

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5 replies
silvern12 | @silvern12 | Jul 8, 2022
In reply to @selene53 "Update: Well, 6 months after my numbness and tingling began after my 4th mRnA shot the..." + (show)
@selene53

Update: Well, 6 months after my numbness and tingling began after my 4th mRnA shot the symptoms are still continuing. Today was a particularly bad day with the neuropathies. I felt like my legs were vibrating and at the same time really heavy. My doctors here have given up on me, I think. I'm scheduled to have a brain MRI in a few weeks, but the neurologist said "Probably won't tell us anything". The neurologist that was recommended in Denver is scheduled 6 months out and then there is a huge waiting list for 2023. I said to the scheduler, "So, in other words, hopeless". She said, "Pretty much for new patients." I asked the one neurologist in my town about a skin biopsy for small fiber neuropathy diagnosis and she said, "We don't do that here". So , Denver seems hopeless and now I'm considering Mayo Clinic in Scottsdale, but don't even know where to begin to find a doctor there. Open to any suggestions. Thanks in advance.

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Impossible to get in to neurology Dpt but worth I try I didn’t succeed

REPLY
pacer3702 | @pacer3702 | Jul 9, 2022
In reply to @selene53 "Update: Well, 6 months after my numbness and tingling began after my 4th mRnA shot the..." + (show)
@selene53

Update: Well, 6 months after my numbness and tingling began after my 4th mRnA shot the symptoms are still continuing. Today was a particularly bad day with the neuropathies. I felt like my legs were vibrating and at the same time really heavy. My doctors here have given up on me, I think. I'm scheduled to have a brain MRI in a few weeks, but the neurologist said "Probably won't tell us anything". The neurologist that was recommended in Denver is scheduled 6 months out and then there is a huge waiting list for 2023. I said to the scheduler, "So, in other words, hopeless". She said, "Pretty much for new patients." I asked the one neurologist in my town about a skin biopsy for small fiber neuropathy diagnosis and she said, "We don't do that here". So , Denver seems hopeless and now I'm considering Mayo Clinic in Scottsdale, but don't even know where to begin to find a doctor there. Open to any suggestions. Thanks in advance.

Jump to this post

The neurological symptoms associated with the Covid vaccines usually peak around 7 months. Hopefully, your symptoms will begin to improve soon. The shortage of neurologists is so challenging for both them and patients. I never thought patients in the U.S. would have such limited access to needed health care.

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1 reply
felicia2 | @felicia2 | Jul 9, 2022
In reply to @colleenyoung "Welcome @detc, I moved your message about vaccine-induced neuropathy and alternatives to the booster to this..." + (show)
@colleenyoung

Welcome @detc, I moved your message about vaccine-induced neuropathy and alternatives to the booster to this existing discussion so you can connect with others.
- COVID vaccines and neuropathy https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/

You might also be interested in learning more about Evushield in this related discussion:
- Have you been able to get Evusheld? Or find where it is offered? https://connect.mayoclinic.org/discussion/evusheld-2/

Jump to this post

Thanks for that re Vacine- induced immune system reactions! Started with 2nd COVID vaccine and has never stopped- after more than a year! Any pills etc. I take ApCodein and it helps a bit.
Is Gabapentin better? Used to take it for arthritis but it made me dizzy!?’ Neurologist/podiatrist say it’s all my arthritis!?!
Any suggestions?
What is EMG? Any answers? Thanks

REPLY
felicia2 | @felicia2 | Jul 9, 2022

Re reaction to COVID vaccine! Yes! Started immediately after 2nd Moderna Vax. And still have pain/ neuropathy daily! Docs say it’s just my arthritis and give me ApCodein. Okay but not good enough!
What about Eyusheld? I read that you should take it right after reaction?!? Byway I always test negative to COVID. The neuropathy is constant! Boohoo!😭

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lindasue716 | @lindasue716 | Jul 9, 2022
In reply to @selene53 "Update: Well, 6 months after my numbness and tingling began after my 4th mRnA shot the..." + (show)
@selene53

Update: Well, 6 months after my numbness and tingling began after my 4th mRnA shot the symptoms are still continuing. Today was a particularly bad day with the neuropathies. I felt like my legs were vibrating and at the same time really heavy. My doctors here have given up on me, I think. I'm scheduled to have a brain MRI in a few weeks, but the neurologist said "Probably won't tell us anything". The neurologist that was recommended in Denver is scheduled 6 months out and then there is a huge waiting list for 2023. I said to the scheduler, "So, in other words, hopeless". She said, "Pretty much for new patients." I asked the one neurologist in my town about a skin biopsy for small fiber neuropathy diagnosis and she said, "We don't do that here". So , Denver seems hopeless and now I'm considering Mayo Clinic in Scottsdale, but don't even know where to begin to find a doctor there. Open to any suggestions. Thanks in advance.

Jump to this post

So very sorry. I have similar. Started after second vaccine. Numbness, pins and needles, lots of sensory sensations. My neurologist agrees that the vaccine has “over activated the nervous system” in some patients. It’s like a form of fibromyalgia. I’m 63. I had NO symptoms prior to vaccine. Great health. I still have symptoms. …about 16 months later. No weakness, nor lack of coordination, no pain… just “paresthesia”. It cycles… gets real bad, the entire left side of my body, then subsides. Affects sleep. It sucks yet most days i can totally ignore it. I have to actively manage the “fear” component in my thinking. If I distract myself well, I feel better. I am sorry for us, and hope you feel better soon. 🙏🏻

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2 replies
selene53 | @selene53 | Jul 9, 2022
In reply to @lindasue716 "So very sorry. I have similar. Started after second vaccine. Numbness, pins and needles, lots of..." + (show)
@lindasue716

So very sorry. I have similar. Started after second vaccine. Numbness, pins and needles, lots of sensory sensations. My neurologist agrees that the vaccine has “over activated the nervous system” in some patients. It’s like a form of fibromyalgia. I’m 63. I had NO symptoms prior to vaccine. Great health. I still have symptoms. …about 16 months later. No weakness, nor lack of coordination, no pain… just “paresthesia”. It cycles… gets real bad, the entire left side of my body, then subsides. Affects sleep. It sucks yet most days i can totally ignore it. I have to actively manage the “fear” component in my thinking. If I distract myself well, I feel better. I am sorry for us, and hope you feel better soon. 🙏🏻

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Thank you for your response. I do know that stress makes everything worse. Good luck to you.

REPLY
selene53 | @selene53 | Jul 9, 2022
In reply to @pacer3702 "The neurological symptoms associated with the Covid vaccines usually peak around 7 months. Hopefully, your symptoms..." + (show)
@pacer3702

The neurological symptoms associated with the Covid vaccines usually peak around 7 months. Hopefully, your symptoms will begin to improve soon. The shortage of neurologists is so challenging for both them and patients. I never thought patients in the U.S. would have such limited access to needed health care.

Jump to this post

Thank you for this information. I am hoping you are right. Yes, so challenging to get an appointment with a neurologist. Also, here in my area, challenging for a cardiologist or gastroenterologist appointment, even orthopedics. Most likely your first appointment will be with a PA or NP. With all due respect, when I make a doctor's appointment, I want to see the doctor. And I am an RN. Good luck to you.

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2 replies
Debbie | @dbeshears1 | Jul 10, 2022
In reply to @selene53 "Thank you for this information. I am hoping you are right. Yes, so challenging to get..." + (show)
@selene53

Thank you for this information. I am hoping you are right. Yes, so challenging to get an appointment with a neurologist. Also, here in my area, challenging for a cardiologist or gastroenterologist appointment, even orthopedics. Most likely your first appointment will be with a PA or NP. With all due respect, when I make a doctor's appointment, I want to see the doctor. And I am an RN. Good luck to you.

Jump to this post

I used to feel the same way re: PA vs MD to see me; if I was given a choice, I picked MD because I feel my total health picture is too complicated and needs MD. However, I’ve come to accept that I will (and do) have many PA’s, and they’ve become front line expectation in these parts anymore. I’m happy to report I’ve had great experience with them, often better than MD! Yes, I do have waits after my appointments because there are things they need to followup with the MDs on before getting back with me, but c’est la vie. I had an MD Cardiologist appointment 2 weeks ago and he coached me to get used to PA’s, that he was sad to report that “Corporate Medical Care” has the cost cutting strategy of recruiting and employing more PAs now vs MDs and PAs will be frontline, MDs further removed. Being former corporate, I know how it was done to accountants, engineers, and many other disciplines. So now it’s in medicine in some parts; some believe that PAs are as good as doctors, just paid less. I’m thinking positive since I’ve had great PAs, trust the MDs are in the background and available for emergencies, and hoping they might even be being freed up to help with research and cures for mystery illnesses like our own!

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