Assuming that this is indeed GBS, it sounds as though you had a relatively mild case, which is good reason for optimism. I am five years out and am doing well, but have a small number of residual symptoms. The main one is some residual numbness in one foot, which can sometimes affect walking and other physical activity. I have had some other (mostly muscular) issues elsewhere in the same leg , but can’t be sure whether or not this is connected with the GBS. I have also had a change in bladder control and behavior, but given my age, that could possibly be coincidental as well. I had a lot of numbness, tingling, and other really uncomfortable weirdness in my legs, but it faded over 2–3 months after I got home  Other than these things, I am just about 100% recovered.  Given what I went through (inability to walk, a month in the hospital (including three weeks in rehab, some really bad pain), I feel pretty darned lucky. Once out of the hospital, I did PT, a supervised exercise program for patients with neurological problems, and a lot of working out at home. My advice: do the hard work now; it’ll really pay off. Good luck!

I got diagnosed with GBS 9 days after receiving both the flu vaccine and shingrix at the same time. That was two years ago. Since then I’ve gotten the J&J and Moderna with no problems.

I don’t know how many other people are in the same boat as I am (diagnosed with GBS in 2019, 95% recovered now), but after receiving the J&J vaccine six months ago, I asked my doctor about switching over to a mRNA vaccine once they introduce boosters because of the acknowledged association of between the J&J and GBS, and he agreed it was a good idea. Now the whole thing with boosters is up in the air –at least for this week. I’m not officially immunocompromised for the “third” mRNA dose that was introduced in August. So my quandary is how long to wait and how hard to push for a first mRNA shot as a “booster”. I’m sure that it’s going to freak out whichever clinic I call because the request doesn’t fall into any of their official categories and no one seems to be discussing this scenario publicly– heck, they almost refused to give me the J&J when I told them I had been diagnosed with GBS after receiving the flu and shingrix vaccines together in 2019.

Sorry to hear this, Courtenay. I wish you a quick recovery.

I fit right within that group of J&J recipients. But we ought to keep in mind that this a pretty tiny percentage, and they talk about 100 *preliminary*, not confirmed, reports. So it’s always good to keep reports such as this one in proper perspective. All too often FDA and CDC releases, warnings, etc. attract alarmist reactions in social and popular media.

Did the people who received the Pfizer vaccine get GBS as a reaction to the vaccine (or did their doctors think so), or from something else? And was the Moderna reaction associated with the GBS, or was it a coincidence?

I got the J&J vaccine yesterday (even though they told me Pfizer when I made the appointment). I’m not on IVIg. Almost a year and a half out from being diagnosed with GBS. They gave me a little trouble, not wanting to give me the vaccine without verification from my doctor that it was ok. T=It was resolved quickly. Anyone else run into anything like that? Feeling fine today.

@ceekaydub Thanks for posting this. I was also diagnosed with GBS as a result of the flu vaccine (in 2019). I think this definitely bears watching. But by itself I don’t think it changes my own calculus about getting vaccinated. Several reasons come to mind. First, the article does not say much about whether they eliminated other possible causes, such as an infection. That leaves the causal relationship a bit tenuous (and it’s probably never 100% anyway), at least from where I sit. Second, even if the vaccine is a/the cause, it probably should not shock anyone. GBS is an autoimmune disease, and vaccines activate the immune system. One documented case is certainly evidence, but statistically it may not be significant. We already have reports (here) of GBS patients receiving the vaccine without incident. Third, there is still no evidence to indicate that the vaccine can cause a *relapse* of GBS.

So yes, it’s a roll of the dice, but I’m hoping the odds are on my side. I’m seeing my primary next week and will ask about this, but I expect that he will have no special information and will likely leave the decision up to me. Of course this could all change if we get more data pointing one way or the other, but we don’t have much yet. That’s my $.02.