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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

I am scheduled to get the booster this week and am hesitant because i have just been diagnosed with peripheral neuropathy idiopathic I also have been having severe headaches for over a month. Can’t find the reason brain ok says might be neck or tmj. Any advice very nervous about getting shot but will be flying to Arizona to move and thought I should get it before traveling.

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@lk61

@dag10 your son’s symptoms sound quite similar to mine. I am now almost 9 months out from 2nd Pfizer and am experiencing very slight improvement. I have tried so many things such as dietary changes without any real effect. I do take a few supplements and vitamins but I think more than anything the passage of time is the biggest thing giving me slow improvement. I am just so grateful it isn’t worse and doesn’t really keep me from doing what I want and need to do. But it has been an extremely frustrating and at times frightening experience. Best wishes for your son!

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Thank you for responding. We are trying the supplements and trying to eat organically. We walk an hour almost daily. I believe that with time all the symptoms will improve. It is scary and frustrating, I agree. I believe strongly in the power of prayers and our God is greater than these symptoms. All things are possible with God. Give Him praise. Thank you Jesus for the healing. Amen.

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@dag10

My son, 34 years, had the 2nd Pfizer injection in May. In July, he complained of tingling in both hands, both legs from the knees to toes. No pain, but sometimes feels weakness and fatigue in these affected areas. MRIs of head, cervical and lumbar are negative as was the EMG/NCV of his legs. Lab work was all negative. The neurologist cannot explain the symptoms, but states he wouldn’t rule out that it may be related to injection. It is now Oct and he says the symptoms are unchanged. I’m greatful that they have not worsened. Any recommendations are appreciated. Has anyone recovered from the symptoms?

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Hello @dag10 and welcome to Mayo Clinic Connect. What a great support you must be for your son while he goes through this. I think it is great to hear you say things that you are proactively doing to help your son recover from his symptoms.

Everyone has seemed to recovery very differently from their symptoms, which makes it challenging. Still, making daily choices that support well-being and healing while the medical community is feverishly learning from data will only help your son.

Is he being seen by a neurologist?

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@amandajro

Hello @dag10 and welcome to Mayo Clinic Connect. What a great support you must be for your son while he goes through this. I think it is great to hear you say things that you are proactively doing to help your son recover from his symptoms.

Everyone has seemed to recovery very differently from their symptoms, which makes it challenging. Still, making daily choices that support well-being and healing while the medical community is feverishly learning from data will only help your son.

Is he being seen by a neurologist?

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Yes. He performed the EMG/NCV in legs. Results were negative. He prescribed Gabapentin, but my son had chosen not to take. He also had MRIs done of brain, cervical and lumbar areas. All were negative as all the regular lab. We plan to ask for labs specifically for inflammation markers. His symptoms of tingling in hands and feet are unchanged. A new symptom this week of right knee vibration if he touches it. No pain. I’m greatful for this.

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@dag10

Yes. He performed the EMG/NCV in legs. Results were negative. He prescribed Gabapentin, but my son had chosen not to take. He also had MRIs done of brain, cervical and lumbar areas. All were negative as all the regular lab. We plan to ask for labs specifically for inflammation markers. His symptoms of tingling in hands and feet are unchanged. A new symptom this week of right knee vibration if he touches it. No pain. I’m greatful for this.

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My son decided to start the Gabapentin 300 mg tablet on 10/3. New symptom of vibration feeling in the right knee. I read up on celiac disease and sensitivity to gluten. This sensitivity may be a cause of the peripheral neuropathy. Starting today, have begun to remove all gluten. The next neurologist appt is on 10/17. I hope my son responds well to the dietary changes and finds relief from the PN symptoms.

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My son, 25 years old , got his second vaccine in May . Sounds very similar . He went to the doctor who advised him to stay away from foods/ liquids that cause inflammation :
-alcohol
-gluten
-processed foods
-carbs/desserts
-…
Take vitamin B
It has been a slow crawl and he has found it scary at times.
We spoke yesterday and he said that it’s better but every now and then it’s rears it’s ugly head. It’s definitely better !
It sounds to me like this takes time! Strangely, from what I have read so far this has been mostly men .
Hang in there

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@dag10

Yes. He performed the EMG/NCV in legs. Results were negative. He prescribed Gabapentin, but my son had chosen not to take. He also had MRIs done of brain, cervical and lumbar areas. All were negative as all the regular lab. We plan to ask for labs specifically for inflammation markers. His symptoms of tingling in hands and feet are unchanged. A new symptom this week of right knee vibration if he touches it. No pain. I’m greatful for this.

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Hi...I am 61 years old and have been an avid walker. Within days of receiving my second Pfizer I started having trouble with my normal walking routine. I basically lost all feeling in my thighs and my feet were numb. I had to will my legs to get me home. They didn't hurt, they were just like two stiff logs. I also developed odd twitching and electrical shock feelings in arms and legs. I am seeing a Physical Medicine/Rehab doctor who did EMG/Nerve Conduction studies and diagnosed me with Peripheral Sensory Polyneuropathy of unknown cause. I had no previous issues before the second vaccine. I am slowly recovering and have regained the strength in my legs and some sensation in my toes. It was a scary event for me. At 61 a stroke was considered, but tests ruled it out. I have been going for physiotherapy which has help a lot. I take Gabapentin as well. I am making small gains very slowly and have to remind myself daily of this. I hate being slowed down to a crawl when I was so very active..I walked hours daily with dogs. The doctors have not come right out and said that it was the vaccine that caused my sudden symptoms. I found this forum and it has really helped knowing that I am not alone,
I hope that anyone that is experiencing similar symptoms receives the care that I have. It has been a lot of work and worry but I feel positive that this too shall pass. Adrienne...from Canada

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@northerncanuck

Hi...I am 61 years old and have been an avid walker. Within days of receiving my second Pfizer I started having trouble with my normal walking routine. I basically lost all feeling in my thighs and my feet were numb. I had to will my legs to get me home. They didn't hurt, they were just like two stiff logs. I also developed odd twitching and electrical shock feelings in arms and legs. I am seeing a Physical Medicine/Rehab doctor who did EMG/Nerve Conduction studies and diagnosed me with Peripheral Sensory Polyneuropathy of unknown cause. I had no previous issues before the second vaccine. I am slowly recovering and have regained the strength in my legs and some sensation in my toes. It was a scary event for me. At 61 a stroke was considered, but tests ruled it out. I have been going for physiotherapy which has help a lot. I take Gabapentin as well. I am making small gains very slowly and have to remind myself daily of this. I hate being slowed down to a crawl when I was so very active..I walked hours daily with dogs. The doctors have not come right out and said that it was the vaccine that caused my sudden symptoms. I found this forum and it has really helped knowing that I am not alone,
I hope that anyone that is experiencing similar symptoms receives the care that I have. It has been a lot of work and worry but I feel positive that this too shall pass. Adrienne...from Canada

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Hi Adrienne. Glad you’re making gains and I will pray that you continue to heal. My son and I walk daily for an hour, eating organic, eliminated sugar and gluten. Despite uncertainty and fear, we are trusting that God is with us on this journey. I pray with these changes and with Jesus, my son will heal. God bless you

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@chloeb2

My son, 25 years old , got his second vaccine in May . Sounds very similar . He went to the doctor who advised him to stay away from foods/ liquids that cause inflammation :
-alcohol
-gluten
-processed foods
-carbs/desserts
-…
Take vitamin B
It has been a slow crawl and he has found it scary at times.
We spoke yesterday and he said that it’s better but every now and then it’s rears it’s ugly head. It’s definitely better !
It sounds to me like this takes time! Strangely, from what I have read so far this has been mostly men .
Hang in there

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Thank you Chloe. This week I have removed sugar, processed foods and foods containing gluten. All organic as much as possible. He is taking vitamins/ supplements: Vitamin D3 125 mg by Nature’s Bounty, Vitamin B Complex( Vit B-12 lab work was in normal range.) in addition to multi-vitamin, Magnesium 200 mg, Essential Omega 3 by Andrew Lessman 2 gel capsules for a total of 1000 mg. and Vit C 1000 mg chewable by Nature Made. We walk everyday, but our 1.5 hour walking is being shortened due to shorter daylight. I’m greatful he sleeps well. (He only took the Gabapentin 300 mg tablet once, he prefers to nit take medication.) I’m so happy to hear your son has improved. I have full faith in Jesus, our Lord and Healer, and I claim Andrew’s total healing. Amen 🙏

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@kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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Hi Kathleen: Did you get your second vaccine, and if so, did your neuropathy symptoms worsen even more?

I developed neuropathy in my feet three weeks after my second Pfizer Covid-19 vaccine which was on March 10. It has remained the same. I have seen a neurologist and had the muscle and nerve tests which were normal. I am reluctant to get a booster.

Thank you, Kathryn

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