Your Replies

  • May 26, 2021 at 3:26 pm

    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?

    April 27, 2021 at 7:39 am

    fwiw, I was diagnosed with GBS (not CIDP) two weeks after receiving *both* the flu and shingrix (Shingles) vaccines at the same time (perhaps not the wisest thing to do in retrospect). That was 18 months ago. DOctors recommended that I stop getting the flu vaccine and to not get the second dose of shingrix. At least at that time, unlike with the influenza vaccine, there was no “known” link between shingrix and GBS. At any rate, since then I’m almost fully recovered, and received the J&J COVID vaccine about five weeks ago without any serious side effects or reactions.

    March 20, 2021 at 9:01 am

    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.

    March 18, 2021 at 9:46 am

    @Jim-LA, would you, or might the medical community more generally, view VAERS reports submitted by medical professionals differently from reports submitted by non-professionals?

    February 23, 2021 at 9:39 am

    @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.

    January 8, 2021 at 5:39 pm

    And the very next paragraph specfically addresses GBS:

    People who have previously had Guillain-Barre syndrome

    Persons who have previously had GBS may receive an mRNA COVID-19 vaccine. To date, no cases of Guillain-Barre syndrome (GBS) have been reported following vaccination among participants in the mRNA COVID-19 vaccine clinical trials. With few exceptions, the independent Advisory Committee on Immunization Practices (ACIP) general best practice guidelines for immunization do not include a history of GBS as a precaution to vaccination with other vaccines.


    December 29, 2020 at 7:18 pm

    Well, I’m beginning to regret starting this thread. It’s apparent that some people suffer from unrealistic expectations, and have a mistaken view that medical experts exist solely to serve their personal needs. Anything less than that makes the latter subject to appallingly flippant — and unfair — criticism. Science depends on data and evidence. You can’t expect anyone to make flawless predictions or express certainty in their conclusions when data and evidence are scarce. That’s one of the things that makes being a GBS patient so difficult; there is much that remains unknown. But lashing out at medical experts is not going to improve your situation, except perhaps to make you feel good because you’re “brave” enough to stand up to the “big shots”.

    And I guess I had unrealistic expectations that participants in this forum would show some decorum — *in spite of* their often difficult and frustrating health situations. For that, I apologize.

    December 24, 2020 at 1:40 pm

    Engaging in misleading and ad hominem attacks against a dedicated public servant just doesn’t add any value to the conversation. It also happens to be off-topic.

    December 21, 2020 at 9:05 pm

    Let’s not get into name-calling, please. In defense of Dr. Fauci, first, the guy has been doing interviews nonstop for 6-7 months, trying to explain medical commonsense to people in the midst of horrible mis- and dis-information about COVID emanating nonstop from the White House. He just turned 80, and he must be exhausted. God bless the man. Second, I think that his statement was not unreasonable, perhaps erring on the side of caution even when there is insufficient data to draw any firm conclusions one way or another. Maybe he will reconsider his position after having a chance to think about it. The GBS Foundation’s position is equally reasonable, although the absence of data may not be the most solid basis for concluding that the vaccine is safe for GBS patients. We just don’t know one way or the other, do we?

    October 22, 2020 at 6:03 pm

    @Jim-LA That’s tongue-in-cheek, right?

    October 18, 2020 at 9:03 pm

    Hi Robert. I am 62, and a year ago at this time I was holed up in an acute rehab hospital for what turned out to be a month’s stay, give or take. My initial treatment was IVIG. My first week in rehab coincided with the low points of my condition: terrible night pain, severe leg weakness, loss of bladder control, numbness moving from my feet up to my knees…

    What followed was several weeks of intense rehab, mainly physical therapy. After a month I went home — still dependent on a walker — and continued outpatient PT and workouts at home. A month later, I graduated to a cane. A month after that, I was starting to walk on my own. Other symptoms were markedly improved. My recovery was really accelerating during this time. I was driving and returned to work by early January, and not long after that I was able to run some and walk long distances unaided. By Spring I was maybe 80% recovered, by my estimation, and I continued to improve with each month. I’m a very active person, and I think that being in decent shape and doing a lot of physical activity had a lot to do with my recovery.

    The symptoms I have still have are numbness in my right foot, what one might call “slightly reduced” bladder control, as well as occasional trips or stumbles that seem attributable to the GBS, and possibly the foot numbness. Perhaps the it’s damage to the same nerve area that causes all of these things. But these are pretty minor things compared to what many people are experiencing, so I consider myself extremely lucky.

    How about you?

    April 23, 2020 at 1:37 pm

    MDs and other experts: please correct me if I’m off-base on any of this. But I can’t help but think that it’s not always simply a matter of “strong” versus “weak” immune systems. In layman’s terms, those of us who contracted GBS have immune systems that got “tricked” (for lack of a better term) into treating our own nervous system as a foreign invader after an infection or vaccine triggered an immune response. I’m reminded of the more recent articles about how cytokine storms — where immune systems sort of went into high gear and did not stop — might have killed so many young people in the 1919 flu pandemic, and could be playing a role in the current pandemic as well. But, as @Jim-LA pointed out, these immune system reactions are not well-understood.

    March 2, 2020 at 3:50 pm

    how long has it been since the final IVIG does? I actually got worse for a few days after completing the IVIG treatment. The doctors told me this would probably be the case. I started improving — albeit slowly at first — after maybe 5-7 days.

    February 18, 2020 at 12:51 pm

    I’m recovering from GBS (flu shot on 9/26) rather than CIDP, but your mentioning of tightness and pain in the legs resonates. My first two weeks I had excruciating pain and tightness in my legs that kept me up all might. The doctors’ initial expectation was that it was strictly nerve pain and prescribed gabapentin, which did nothing. After sitting the doctors down and describing the pain in detail, they experimented with some combos that targeted the muscles until finally something worked. The key for me was flexeril (cyclobenzaprine, a muscle relaxant); they also gave me baclofen (antispasmodic). So it might be worth getting the doctors to try something along these lines.

    I hope this helps and that you find relief soon!

    December 18, 2019 at 6:57 pm

    I raised the vaccine question at a neurology followup today. I’m particularly interested in the shingrix (not so much the flu shot, which my doctors attributed the GBS to), since I’ve already had the first of two shots and think there’s a decent chance of my getting shingles without the vaccine. The neurologists seem to initially lean against taking vaccines, at least in the first few months or even year or two after contracting GBS. When pressed a little, my doctors agreed to consult with an immunologist before giving me a definitive recommendation. I don’t know what medical professionals think about this, but to me this is more of an immunology question than a neurology question.