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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dhamil | @dhamil | Sep 4, 2022
In reply to @detc "I was able to see the immunologist already. We had a lengthy discussion about probable, vaccine..." + (show)
@detc

I was able to see the immunologist already. We had a lengthy discussion about probable, vaccine induced neuropathy and the concerns of getting more boosters vs increasing risk of being unprotected and getting Covid. Of course, as we’ve all learned, none of these preventative measures guarantees not getting Covid, but in general, lessens severity. She felt that Evusheld would be a good and safe plan for me. I am otherwise healthy. I have no known heart issues, which is definitely an issue to be addressed with Evusheld. She said that she felt comfortable prescribing the injections for me, that she would take it herself and she would tell her parents to take it. That gave me some reassurance about moving on with it. I had to be approved because Evusheld is generally reserved for immunocompromised patients, but there are exceptions for those of us who have had serious side effects, likely from the vaccines. I am scheduled to get my injections later this week. I’m hoping that it will be my answer to maintain some level of immunity from a serious case of Covid. I think every doctor and patient needs to evaluate whether it’s advisable in each case. I did a lot of research on my own. There is a also a patient fact sheet and a health care provider fact sheet on Evusheld available on the internet. I hope this can help you in some way. Good luck.

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Really happy for you. It sounds reassuring that it would be a good fit for you. Unfortunately I do have some heart issues now. That’s what’s held me back so far. My Echo says my heart muscle is healthy except for mild mitral prolapse. But I’ve developed increased heart rates, skipped beats and extra beats and pots after getting vaccinated. My cardiologist said she knows nothing about Evusheld to advise me! I am in the process of looking for an immunologist/allergist to see what they have to say about my situation. Did you make an appt with a general immunologist/allergist or did they have a special interest in vaccines? If it’s any reassurance for you My rheumatologist said He didn’t believe Evusheld would cause the same reaction as Pfizer did in me because it has a different type of antibody. But we also didn’t know about my heart issues at that time. I hope you get approve. Wishing you all the best next week. Please let me know how you make out.😊

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2 replies
detc | @detc | Sep 4, 2022
In reply to @dhamil "Really happy for you. It sounds reassuring that it would be a good fit for you...." + (show)
@dhamil

Really happy for you. It sounds reassuring that it would be a good fit for you. Unfortunately I do have some heart issues now. That’s what’s held me back so far. My Echo says my heart muscle is healthy except for mild mitral prolapse. But I’ve developed increased heart rates, skipped beats and extra beats and pots after getting vaccinated. My cardiologist said she knows nothing about Evusheld to advise me! I am in the process of looking for an immunologist/allergist to see what they have to say about my situation. Did you make an appt with a general immunologist/allergist or did they have a special interest in vaccines? If it’s any reassurance for you My rheumatologist said He didn’t believe Evusheld would cause the same reaction as Pfizer did in me because it has a different type of antibody. But we also didn’t know about my heart issues at that time. I hope you get approve. Wishing you all the best next week. Please let me know how you make out.😊

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I’m sorry that you have issues that might compromise you if you received Evusheld. I did see a general immunologist/allergist. Thank you very much for the reassurance your rheumatologist voiced. I appreciate that. I have already been approved for the shots, thank you. I hope that you find a doctor who can give you the best advice possible for your personal situation. I completely understand the concerns about trying to seek appropriate protection against Covid. I will try to report my experience with Evusheld. Again, I wish you the best of luck.

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detc | @detc | Sep 14, 2022

Has anyone who has been diagnosed with vaccine induced neuropathy also gotten Covid? If so, could you share whether Covid flared or worsened your neuropathy? Thank you.

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1 reply
selene53 | @selene53 | Sep 14, 2022

Question : Does anyone have any information on how long it takes to get FGFR3 and TS-HDS blood test results ? These are autoimmune antibody tests that my neurologist ordered. Does only one lab in the United States do these tests? My neurologist advised me to hold off on the Omicron booster until these results are in. Thanks in advance.

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1 reply
pamelaz | @pamelaz | Sep 14, 2022
In reply to @ron55 "After my second Pfizer my involuntary movements started !!" + (show)
@ron55

After my second Pfizer my involuntary movements started !!

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I agree. That’s when my neuropathy started and has gotten worse.

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pamelaz | @pamelaz | Sep 14, 2022
In reply to @selene53 "Question : Does anyone have any information on how long it takes to get FGFR3 and..." + (show)
@selene53

Question : Does anyone have any information on how long it takes to get FGFR3 and TS-HDS blood test results ? These are autoimmune antibody tests that my neurologist ordered. Does only one lab in the United States do these tests? My neurologist advised me to hold off on the Omicron booster until these results are in. Thanks in advance.

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I agreed. I have neuropathy, optic nerve damage and my right arm is numb.

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detc | @detc | Sep 15, 2022
In reply to @dhamil "Really happy for you. It sounds reassuring that it would be a good fit for you...." + (show)
@dhamil

Really happy for you. It sounds reassuring that it would be a good fit for you. Unfortunately I do have some heart issues now. That’s what’s held me back so far. My Echo says my heart muscle is healthy except for mild mitral prolapse. But I’ve developed increased heart rates, skipped beats and extra beats and pots after getting vaccinated. My cardiologist said she knows nothing about Evusheld to advise me! I am in the process of looking for an immunologist/allergist to see what they have to say about my situation. Did you make an appt with a general immunologist/allergist or did they have a special interest in vaccines? If it’s any reassurance for you My rheumatologist said He didn’t believe Evusheld would cause the same reaction as Pfizer did in me because it has a different type of antibody. But we also didn’t know about my heart issues at that time. I hope you get approve. Wishing you all the best next week. Please let me know how you make out.😊

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I received the Evusheld injections last week. Thankfully, all went well. I have not had any side effects to this point. I read that the protection begins within about one hour after the shots. When you receive the vaccines, the body needs to produce antibodies but with this, lab produced antibodies are injected and therefore ready to go. I found that very interesting.
I hope that you’re able to find safe protection from Covid with your other health considerations.

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dhamil | @dhamil | Sep 15, 2022

That’s great! I was wondering how you did…thanks for letting me know. By chance did they say if they know if it’s as protective against this most recent variant.

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1 reply
detc | @detc | Sep 16, 2022
In reply to @dhamil "That’s great! I was wondering how you did…thanks for letting me know. By chance did they..." + (show)
@dhamil

That’s great! I was wondering how you did…thanks for letting me know. By chance did they say if they know if it’s as protective against this most recent variant.

Jump to this post

Thank you. They did not discuss whether it’s protective against the new variants. I haven’t read anything that says they have addressed them either. I just felt that taking the injections was the best option for me as opposed to having no current protection at all.

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txsongbird | @txsongbird | Sep 16, 2022

Yes! I am 57 and bilateral peripheral neuropathy (legs/feet) started after getting two doses of the COVID vaccine (Moderna). I will NOT be getting the booster.

I have progressed from a walker to a cane. I do not trust that I can move quickly enough if I needed to slam on the brakes, so I have not driven in over a year, which totally sucks. I love driving, exploring, road trips, etc.

I miss driving -- a lot. Thankfully, my hubby is retired and can manage any driving needs. He also is now 100% in charge of grocery shopping and cleaning. I am blessed to have him as my spouse and to be able to walk through this journey with such a good man.

I have filed for disability due to the neuropathy and all of the limitations it puts on my life. The pain is unbearable some days, so I have worked with a doctor in my state for a Rx of medical CBD/THC. It helps tremendously. Within a few minutes of taking the gummy, my nerve pain subsides to "tolerable to gone".

Hang in there and thank you for sharing your story.

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