Your Replies

  • August 17, 2021 at 2:51 pm

    Our immune system attacked the myelin sheath on our nerves. Our system is over active. It overreacts to stimuli as a doctor told me.


    Since at least one of the vaccines now has a warning about gbs, I’m not going to risk having my immune system overreact to something in this vaccine. I don’t get a flu shot for the same reason. I’ll continue to take precautions as I have for 15 years now.



    Stay safe & be well.

    January 20, 2021 at 5:00 pm

    My soft palate has been numb since I had gbs almost 15yrs ago. I have no gag reflex either. The right side of my face also has decreased sensation. Never diagnosed with mf variant.

    November 28, 2020 at 12:45 am

    There have been more cases of gbs in covid Patients. They’re thinking there may be a connection between the two.

    September 23, 2014 at 9:54 pm

    Derek…*hug* I am so incredibly sorry you have no answers as to what is going on with your body. It sounds like CIDP since it is relieved with steroids. I am not a doctor, just someone who has done a whole lot of research for over 8 years. Have you seen a neuro?

    September 23, 2014 at 9:48 pm

    I agree with everyone here except GH. Way too many cases of GBS happen after a flu shot or vaccine. And yes they do have a form that you sign regarding GBS and even have information against getting a flu shot in literature about the flu shot. You can get hit with this by having surgery, getting a cold, the flu, eating tainted meat….and so on. A lot of us have done exhaustive research for our own answers and have become our own advocates for our care. And we are still learning because it is in our own best interest. We don’t settle for the first thing that comes up on google. We dig deep, we find obscure bits of information, I have even personally had emails between Dr. Gareth Parry and myself asking and receiving information I had trouble finding elsewhere. Did you know your body can negatively react to even being pregnant? Did you know that the hormones in your body can cause your system to react in a negative way causing residuals to flare up? Even Caffeine, fake sugars, certain other foods. And the crappy one, sometimes your own body keeps on the attack long after GBS is “gone”.

    Vaccines and GBS are not a conspiracy theory. WAY TOO MANY people have gotten ill because of this disgusting vaccination for it to be brushed aside as a coincidence. Easier to brush it under the rug or call people crazy than being sued over and over again.

    September 23, 2014 at 10:23 am

    I had a bad reaction to levaquin. Tendons, ligaments all so sore I could barely move. Evil drugs!! I felt as if I was having a relapse of GBS! I actually stuck with it for the whole duration of the medication. So sorry you had to go through all of this hell.

    September 23, 2014 at 10:19 am

    it has all but come to a dead stop. The information here is poor for the most part and lack of support makes getting through the tough times more difficult. Wonder if people looking for information or support know that MDjunction has a ton of different active groups pertaining to GBS? I guess they do now. It is a shame this forum has fallen by the wayside because it was at one time a haven and a big help.

    September 23, 2014 at 3:43 am

    I agree that stretching helps a lot. You may notice that the following day when you try to stretch or if you skip a day or two, you will be back to square one and not so stretchy. BE cautious how much you push yourself. You are still pretty new to this and things are still trying to come back online and heal. Your daily limit of activity may change often or may not. Rule number 1…rest rest rest and listen closely to your body. Or it will force you into down time. Muscle twitching/spasms do ease with time. I remember when I didn’t have a night of my usual twitching. I thought something was terribly wrong with me! lol just my system trying to heal and recover. I still get spasms and twitches and must take a muscle relaxer at night.

    September 23, 2014 at 3:37 am

    I recently read that in 85% of cases the cranial nerves are involved to some extent. Do some research and lots of digging into the 10th cranial nerve and the effects it has on the body. I still have no gag reflex, still have problems swallowing and sometimes clearing my throat, digestive issues, heart palpitations, up and down blood pressure, body temp that has dropped as low as 93.9 in a warm house while dressed comfortably, other times I will start sweating even if the weather is cool, get hiccups sometimes just by changing position in bed. Anyhow, read up on the autonomic system problems with GBS and the different cranial nerves.

    I got hit in 06. Have recently been Dx’ed with seronegative RA, non-allergic rhinitis, Dx’ed with fibro and chronic fatigue 2 years after onset. I was told the GBS did a job on my system and my system is still reacting inappropriately. Still get muscle weakness without warning, numb patches, tingling, electric type shocks all over, blurred vision that comes and goes, trembling in my hands (horrible hand writing now), muscle cramps, twitching…long list sorry.

    September 23, 2014 at 3:22 am

    I have to disagree. There are plenty of GBS patients who complain of memory issues regardless of the meds they take. I am not on anything that would cause this, was not on anything during my illness or recovery and yet I had awful memory problems since day one of onset and still going on. Although there are meds that can interfere with memory, I find it too much of a coincidence that so many patients complain of this very thing. Look for information online about this very problem.

    October 5, 2013 at 12:53 am

    wish someone had answered this for you….I had that bear hug feeling for several years. It comes and goes now after 7 years. I hope yours stays away permanently. The numbness and such is normal considering you are so very early in your journey. Some days it may feel really bad, others it may seem as if you are almost back to normal. Remember that each day your body is busy healing, rebuilding, and it will take time for this to all fall into place. No one can say how long it will take, how much recovery you will have, it is all so very individual. Also, mild cases can be worse in the grander scheme of things than being paralyzed–a bad case. You may very well have little to no residuals once you recover, something positive to look forward to! I really hope everything goes well for you and that you heal quickly and completely.

    take care of yourself and remember to rest, listen to your body, and never give up

    February 16, 2013 at 10:13 pm

    When I first got sick 7 years ago, I could not go to the bathroom. I just sat and waited. Today, I still don’t have the sensation that i have to go until I am about to have an accident. Even then it takes effort to actually go. My doctor told me to see a urologist to see about a nerogenic bladder. I have not done this yet.

    How long has your hubby been dealing with this? I am not sure if this will help with the UTI’s but my daughter has issues with recurring bladder problems so I have her on Cranberry capsules. She has improved and says she feels better. She doesn’t have GBS just the uti’s and bladder thing.

    I really hope someone will post with better information than I have. I know healing is a personal thing, but from personal experience things seem to come back gradually as nerves come back online.


    October 23, 2012 at 11:19 pm

    Thank you so much for your reply. So healing or ‘the nerves have rebuilt’ is a good thing but damage is damage. Now it is time to try and heal otherwise…


    August 17, 2012 at 12:15 am


    July 7, 2012 at 2:39 am

    I am 6 years post onset and still experience muscle cramping or the threat of a cramp or two if I try to stretch my legs. I am okay doing a yoga stretch dvd (it is gentle and yet gives me a sense of getting a work out), but those early morning hours are scary. I also was wondering about being very sore, stiff, and achy in the morning. I know I was while still sick and in the first year or so, but didn’t realize others had the same thing so long after. I have tried magnesium and calcium supplements, am on a muscle relaxant, make sure I stay hydrated (bought 30oz tumblers and do a mix of coconut water, lemon juice and filtered water and end up drinking about 4 tumblers a day, plus i keep one nearby at night), I keep bananas on hand too. I also started drinking the apple cider vinegar (Bragg’s is the best! I can actually drink it straight and enjoy it) for health benefits. I still haven’t been able to ward off the cramps/threat of cramps or twitching completely but at least I am trying to do better things for my overall well being. It does get better with time, when I realized I was not twitching as much after all this time I thought something was wrong LOL. I did make tonic water a staple in our house and drank it often. It does take some getting used to, but if it is really cold it is quite refreshing and once you are used to the taste (it isn’t a bad nasty taste, just a different one. Kinda citrus-y). Hope you find relief and solace.