Living with Polyneuropathy CIDP, GBS, & CMT



Gayleen - I see where you say you had GBS twice. I believe I read we have a 5% chance of recurrence. Did you have it bad the second time? I have it in the back of my mind - hoping it will not come back. I have been told to never get a flu shot. Nebretta


Yes, I was 30 the first time and do attribute that possibly to a flu shot. The 2nd bout 2 years ago, just over 34 years later just started with a severe some throat, same as the first time, no flu shot though. Very rare to be hit twice. Praying that will never happen to you and shouldn’t statistically. 2nd bout I was on a ventilator and had my vocal cord damaged as a result of improper placement and 2 years later still have the tingling numbness ( apparently labelled peripheral neuralgia) as a result but gave full muscle function thank goodness.
Definitely avoid flu shots. Good luck wishing you wellness.


Hi I’m 2 years post gbs iv now developed osteoarthritis in a lot of my joints since developing gbs, in most joints and in my spine, I am wheelchair bound , and am lonely and frightened of my gbs coming back again, iv just been diagnosed with broncectacis and more recently cops and had to be hospitalised and given oxygen, I now have to have 15hrs of oxy a day, my immunity is low I get very tired and forgetful. It would be lovely to hear from some one .


I had gbs very severe my lungs collapsed I am wheelchair bound I do have careers in but. Am being positive I think, it does worry me having a relapse again, as I was hospitalised in July I couldn’t breath and was admitted I have drochectasis, and more recently cops and have home oxygen and a nebuliser. I do hope you feel better soon, it is nice to talk to someone else with similar symptoms good luck god bless .


Hi Liz,
Had GBS a little over 2 years, legs and face paralyzed, every time got a flu, fever or any infection, my legs tingles and spasms specially in my legs and the arc of my feet are very strong, and painful specially at resting time. Once flu or fever is gone would take about a week to feel better. I read that nerves are weak and not provide strong communication to muscles.