Neuropathy made much worse by Covid Jab, anyone?

[Trickysite]

4b HGS, BRCA 2. On chemo and then 2 years of Olaparib, I developed peripheral motor neuropathy from knee to ankle and needed to use walking stick for heavy legs and resulting poor balance (previously walking like Miss Skippy Toes). 4 months after my last Olaparib (Jan 2024) , my walking was slightly improving as nerve damage showed signs of healing. July, had my 9th Covid jab,(in fact the second time I had received Moderna). Had NEVER had the slightest reaction to any of the covid jabs. Wham with the ninth jab!

4 hours later, had slight itch around jab area but no real problem Lasted a week. Second week, breathing a bit fast and shallow. Third week, electric shooting sparks (neuropathy) going like mad at night for a week. Followed by very, very heavy legs. Now have to use a walker both at home and outside. Have lost 75% of my ability to walk. Constantly nearly losing balance at home and have to clutch walls and furniture all time to prevent falls. Walk very slowly with wheeler.

Went to lecture by Prof. Van Tam who said Moderna known to cause more side effects, Pfizer less so.

Just wondered, if anybody else had similar effect on neuropathy, with Moderna or any Covid jab ?

Have filled in yellow side effect report card so Moderna knows.

I was always very pro jabs, but now am refusing all jabs as don't want to lose my last 25% of ability to walk. Marsden Onc referring me to Professor Williams (who he?) to see if any help.

So, I suggest you ask for Pfizer, dear ladies.

Happy New Year,

Love,

Emma

x

[delia2]

Hi. I’m sorry this has happened! Could it be Gillian-Barr? I know that’s a possible side effect of flu shots. At least you can recover from that. I hope you get some answers and a better 2025.

[Trickysite in reply to delia2]

No, not Guillaume Barre. My sister in law had that (not from covid jab) and it affects complete nervous system and in 24 hours makes you paralysed, blind, and dumb. Only hearing left. Thankfully, in nine months she made a complete recovery. That said, there is, I believe, a slight increased statistical link between covid jabs and the incidence of GB, but still rare. I don't want to frighten everyone off from covid jabs. I am sure these side effects, including mine, are very rare. Just wish I did not have mine! And wondered if anybody else with neuropathy found covid jab aggravated it. Happy New Year. Emma

[Bluegreenlover in reply to delia2]

I had terrible side effects from a Pfizer jab but do fine on Moderna. Maybe you are massively allergic to one of the ingredients in the Moderna jab. I wonder if you can ask your doctor to check the side effects data base to search for other people with similar bad side effects. I hope the doctors figure out how to help you regain your mobility.

[Trickysite in reply to Bluegreenlover]

Hi There, I find the website MedilinePlus a very good source of information on side effects. I gather less than 1% have nerve side effects from Covid. Looks like I am the lucky 1%! Happy New Year, Emma x

[Joanne59]

hello, I haven’t had problems from Covid jabs although I have refused last few times due to hearing stories of effects. I do have peripheral neuropathy from chemo affecting my left arm and leg badly. I use a small (phone size) tens machine regularly, not sure why this works but I do improve after use. I can take it everywhere with me as not noticeable. Maybe you could give it a try. Good luck and happy new year x

[Trickysite in reply to Joanne59]

My neuropathy is motor peripheral so it means it affects my balance of legs and I walk as if I have cerebal palsy but it is not painful. Win some, lose some ! Emma

[Artgreen]

I’m so sorry to hear this . I had a bad reaction to joint flu Pfizer covid jabs. Terrible myalgia ( in top of chemo and letrozole joint pain) and stopped taking letrozole . It lasted about a year and now I have separate jabs. I filled in the yellow card too. I hope you find you can recover. It’s taken me ages but I’m getting there. My neuropathy still is weird sometimes( like electric shocks) but my balance is better. My muscles are much stronger too 4 years on.

Very best wishes

Alex

[Trickysite]

Yes, I am an electric shock neuropathy girl, too. Sorry it took you so long to recover but glad you did! One learns the meaning of the word patient. So pleased to hear your balance is better, too because mine is all over the place. Thank you for sending me this really encouraging news. Happy New Year, Emma x

[Pianoplayer731021]

Hi, I had a reaction after my first Covid injection. I developed a pain behind my right knee and the Dr. told me that I had a Bakers cyst. This happened within in an hour after the shot. It finally went away after a few months , but wasn’t a pleasant experience. I was hesitant to do any more in the future. It was the Pfizer one. I just opted out of having that again, because of developing more side effects. Sending best wishes, Donna xx

[Trickysite]

I think there are all sorts of side effects which may emerge, but let's hope that they not as bad as my disabled walking. Lots of worse things happen on this website, so I should not complain.

Lots of good things, too! Emma x