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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kimegraves | @kimegraves | Nov 10, 2022

In reply to @shara "My pn started after my 1st Moderna Covid shot. I’ve had 5 shots with increasing pain..." + (show)

Have you seen your primary care MD?

detc | @detc | Nov 11, 2022

In reply to @pacer3702 "Thank you. That's very helpful information. Do you mind sharing the state where you live? Your..." + (show)

You’re welcome. I live in Ohio. My neurologist is Barbara Merriman and she is at the Cleveland Clinic here in greater Cleveland. She’s been fantastic for me. Very grateful. Good luck.

pacer3702 | @pacer3702 | Nov 11, 2022

In reply to @detc "You’re welcome. I live in Ohio. My neurologist is Barbara Merriman and she is at the..." + (show)

Thank you. That's out-of-state for me, but I'm still benefiting from your doctor's expertise thanks to your posts. It's great that she is so proactive in protecting your health.

detc | @detc | Nov 11, 2022

In reply to @pacer3702 "Thank you. That's out-of-state for me, but I'm still benefiting from your doctor's expertise thanks to..." + (show)

I’m so glad that you feel that you’re benefiting from the information that I’ve shared. Thank you so much for letting me know that. Take care.

phoenix29412 | @phoenix29412 | Nov 11, 2022

In reply to @detc "You’re welcome. Thank you for your kind words. I’m happy that your symptoms are improving and..." + (show)

Hi, I had Covid in August - took Plaxovid (5 days). On the 6th day the left side of my face became numb starting with my earlobe. The numbness has spread up and down the left side of my body. My B12 was 203 so I'm taking supplements.
None of my doctors offered steroids as a way to stem the progression. I have Pulmonary Sarcoid and MAC as well. Nerve conduction test is next week.

detc | @detc | Nov 11, 2022

In reply to @phoenix29412 "Hi, I had Covid in August - took Plaxovid (5 days). On the 6th day the..." + (show)

I’m sorry to hear about your symptoms. In my case, the diagnosis was peripheral neuropathy, which presented in both sides of my body. The plan to use a short term course of steroids would start as early as possible with the onset of symptoms. I hope that you will find resolution to your situation. Best of luck.

betl | @betl | Nov 11, 2022

This is the first time I’ve posted and have read comments from many with PN. I’ve been diagnosed with idiopathic peripheral neuropathy. The diagnosis was based on results of EMG. I’ve had epidural steroid injections twice to no avail. It started with tingling of feet and has moved to lower legs effecting muscles. I am in pain most of the time and find that I can no longer exercise or take long walks as before. I tried Gabapentin but did not like the side effects so use Aleve sparingly. I have always been quite active and am trying to determine the cause of the neuropathy. My primary care doctor is of the opinion (after review of a complete blood panel and urinalysis and his own testing) that the cause of my leg problems may not be neuropathy connected. He is sending me to see an orthopedic. I have a future appointment with a neurologist also. As for Covid, I had it early in 2021 and had Mono-Clonal antibody treatment. The neurology surfaced in early 2022 and has been present throughout 2022 during which time my condition has worsened. Has anyone been to the Mayo Clinic in Rochester? I am in NC but was a patient at Mayo Clinic in Jacksonville for several years. If no resolution to the cause and/or treatment is determined, I am wondering which Mayo Clinic location would be a better choice. I have read that the Mayo in Rochester specializes in Neurology, although the Jacksonville location would be closer. Any ideas on treatment options that alleviate symptoms would be helpful.

John, Volunteer Mentor | @johnbishop | Nov 11, 2022

In reply to @betl "This is the first time I’ve posted and have read comments from many with PN. I’ve..." + (show)

Hello @betl, Welcome to Connect. I also have been diagnosed with idiopathic small fiber peripheral neuropathy but I don't have any associated pain, just some numbness and a little tingling. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/

I was diagnosed by a neurologist at Mayo Clinic Rochester after having the condition for 20+ years not having a diagnosis, just numbness symptoms. I don't think it makes much difference as far as treatments go. They can only treat the symptoms as there really is no cure for neuropathy. There is a good list of available treatments on the Foundation for Peripheral Neuropathy website here that might be helpful - https://www.foundationforpn.org/treatments/

Has your primary care doctor shared what they think could be causing the symptoms if it's not neuropathy?

betl | @betl | Nov 11, 2022

In reply to @johnbishop "Hello @betl, Welcome to Connect. I also have been diagnosed with idiopathic small fiber peripheral neuropathy..." + (show)

John,
Thank you for your reply. You are fortunate that you’ve not had pain with the neuropathy. Mine started with tingling of the toes but soon graduated to leg and muscle pain. Leg pain was the reason the EMG testing was done. The final diagnosis was ideopathic peripheral neuropathy. I’ve had a complete physical hoping to locate the cause. My primary care doctor’s belief is that the neuropathy and leg/muscle problem are two different issues, although I realize that neuropathy can also affect the legs, as well as hands, etc. The doctor does not know more which is why I have now been referred to two different specialists. Thanks again for your response.
Betty

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