what was the cause of YOUR GBS?

    • Anonymous
      May 19, 2006 at 12:03 pm

      I was wondering if you all could give me some insight as to what you feel was the cause of your GBS. My mother is in rehab, recovering and doing very well, a little each day.
      I had a fellow church member visit her and he told her he got his GBS from a flu shot in 1996. I would also like to know how long the virus takes to manifest it self in the form of paralysis.
      Just wondering……
      Thanks to everyone for prayers and information….
      Devoted Daughter Donna……

    • Anonymous
      May 19, 2006 at 12:33 pm

      Welcome Donna,
      I am glad to hear that your mother is doing well and making steady improvement. šŸ™‚

      In answer to your question about how long it takes the “virus” to manifest itself in the form of paralysis that is GBS…….there isn’t a GBS virus itself per se. GBS can follow a viral infection (upper respiratory for example), bacterial infection (campylobacter jejuni infection, 1 in 1000 persons who contract this form of food poisoning will go on to develop GBS), vaccinations(including more than the flu shot), and more, many cases are idopathic in source, no one can really determine exactly what triggered the illness. Basically anything that can cause the immune system to go into “overdrive” and trigger the autoimmune response that leads to the destruction of the peripheral nervous system myelin could potentially be a source. (I do know of one woman personally who developed GBS while being treated for ovarian cancer.)

      For myself, I am one of the ones with an idiopathic source, no cold/flu, vaccines, food poisoning, etc. before my GBS developed. It did come on quickly, three days from my feet going numb to total head to toe paralysis.

      I wish your mother a continued healthy recovery, my very best wishes to your mom, yourself and your family,

      cg

    • Anonymous
      May 19, 2006 at 1:38 pm

      Hi Donna,

      There was a similar thread on our old Forum. I recall reading a couple of posts in which people posted saying that they were scratched by a wild cat (or animal, cant quite remember), and that this was what they believed was the cause of their GBS. After reading this, I remember thinking that this could have been the trigger for my GBS. I had picked up a wild, stray kitten in the middle of nowhere, and it had scratched me rather badly. Two weeks later, my symptoms began.

      I had also heard that in some cases, coming into contact with animal and bird droppings, was what some patients and their doctors believed was the ’cause’ of their GBS.

      Wishing you all the best for your mother, and your family. šŸ™‚

    • Anonymous
      May 19, 2006 at 2:13 pm

      Hi Donna,

      My husband Frank developed GBS from the “Flu Vaccine”in Dec, 2000. But it’s not only the flu vaccine that causes GBS, any vaccine can, as it can develope from anything. My husband started getting sick within 8 days of the vaccine. Everyone is different in the time of onset and healing.

    • Anonymous
      May 19, 2006 at 2:29 pm

      Donna,

      They/we aren’t sure what caused mine for certain.

      Glad to hear she is making improvement daily, tell her to hang in there.

      Jerimy

    • May 19, 2006 at 2:44 pm

      Donna,
      The Nuerologist told my wife when she asked how do you get this, “bad luck”. I had mild flu like symptoms for about two weeks prior to “tingling”. I awoke one morning with my feet feeling as if asleep, by the next afternoon I could not walk and was admitted to CCU, two days later – life support.
      The theory here was the sooner we stop the progression the sooner you will heal. I had IVIG and Plasmapheresis…….
      Nine weeks 2 hospitals, 1 rehab hospital, discharged with walker and out patient therapy. The beginning was Aug 2, 2005. I am now doing everything I did before including golf…..my feet and hands are still tingling and I can’t pucker…but hey I can speak, walk, drive, and go without a diaper. Life is good.
      Keep positive. Almost everyone has different rates of progression and recovery.
      Al

    • Anonymous
      May 19, 2006 at 2:47 pm

      My GBS started approx. 14 days after minor surgery. The doctors do not know if this was the trigger or not. I had no previous illness or other exposures that were suspicious.

      Personally, I believe that the attack may have resulted from a combination of many months of overwork (very long hours and lots of stress) prior to the surgery. The surgery may well have been the final “insult” to my body that triggered the attack.

      I would add to CannuckGirl’s info. that GBS can also attack the nerve as well as the myelin sheath surrounding the nerve. This was the case for me.

      Best wishes to your mother with her recovery.

    • Anonymous
      May 19, 2006 at 5:01 pm

      I recieved a tetanus shot and had a baby 2 wks before the onset of my GBS in 1993, the neuro said that it was likely caused by the tetanus.

    • Anonymous
      May 19, 2006 at 5:27 pm

      Hi Donna,

      Glad to hear that your mother is doing well. I/We don’t know how I got my GBS either. I was not unwell before hand and did not have any vaccine.

      Good luck and Best Wishes,
      Debbie

    • Anonymous
      May 19, 2006 at 5:32 pm

      I had an upper respiratory infection then GBS… Both my primary care doctor and the neurologist believe that was the trigger for GBS.

    • Anonymous
      May 19, 2006 at 5:36 pm

      Some of the causes that could have triggered your GBS/CIDP:

      Any Vaccine
      Campylobacter jejuni( a gram negative bacterium found in the bowel) can be
      caused by under cooked chicken, etc.
      Upper Respiratory Infections
      the Flu
      Dental Work
      Surgery
      Sore Throat
      the Common Cold
      Stomach Virus
      Epstein Barr Virus
      Some Cancers
      Lupus
      Urinary Tract Infections

      They even have said and it’s rare, even insect bites.

    • Anonymous
      May 19, 2006 at 5:54 pm

      I had a very severe asthma attack a few weeks before I came down with GBS, so the guess is that’s what caused it

    • Anonymous
      May 19, 2006 at 6:35 pm

      Hey Guys:

      Glad to see a bunch of the old bunch back and a bunch of new people, altho I am sorry to see them here. Welcome.

      Monday was great. The doc took a full history, whey excellent up to date EMG tests, and 9 tubes of blood. The EMG doc said I definatley had a neuropathy and it was asymetrical, meaning different from left side to right. Given the history, Dr. Hahn said that my problem stemmed from the ears, nose and throat infection that I had a year ago last March/April. I don’t have GBS because of the slow progresstion over 4-5 months, but she said that it was not CIDP because CIDP is not normally caused by an infection. She called it ‘Post Infection Neuropathy’. I am recovering. I have my difficulties and pain, but I am getting better. She says that I should recover. I have to keep up the physio on my own because the group benefits have already been topped out for this year.My drumming in a drum corps has buildt up my strength in my hands, legs and feet over the winter. The drumming in itself has been physio for my hands. Over the winter, I could still barely walk, but it’s improving. I await the result of the tests which she says should take 7 to 10 days. She promised to send me the same report that she sends my idiot GP, as she realized that my GP was not trustworthy enough to relate the diagnose to me.

      Geez, as a mom, I worried about ear infections, but not a neuropathy. Wow, what a thought.

      So am I still welcome, lol, I know I am. I don’t have GBS/CIDP. So much discussion…Is it GBS or is it CIDP. The forum is also for the Foundations statement of [B]’other neuropathys’. [/B] It seems that we have to stop labelling ourselves. It is quite possible that a lot of docs label the GBS or CIDP diagnosis on a patient just to have done with it and it’s an easy way out through ignorance

      Luv you all
      Jules01 aka Val.

    • Anonymous
      May 19, 2006 at 7:07 pm

      Dear Val,

      Finally, some decent discussion with a doctor. You seem to be happy with your visit, and with the results, and, you finally sound as if you are at peace with everything. I think that doubt, and the attitude of your doctor, was extremely stressful for you, and Im really glad its finally resolved. When you get the results of those test, dont forget to let us know.

      You can never think of leaving, we would miss you!:D

    • Anonymous
      May 19, 2006 at 7:24 pm

      Val,

      You’ll always be one of us, I hope you stay.

      Jerimy

    • Anonymous
      May 19, 2006 at 7:56 pm

      The Dr’s said mine was a result of viral meningitis I had the week before. I remember turning on my car’s air conditioner and it having a funny smell. A coworker of mine said he is 100% sure he got his the same way.

    • Anonymous
      May 19, 2006 at 8:51 pm

      Hi,

      I believe my trigger was a car accident. I was stopped at a red light when someone rear ended me at approx. 50 mph, I was mildly injured. Two weeks later I could barely walk.

      Emily

    • Anonymous
      May 19, 2006 at 9:32 pm

      Dear Friends:

      Mine was caused by religious zealotry. Okay, the more proximal cause was scarlet fever and an upper respiratory infection. My family has a history of GBS, so I was probably a walking time bomb waiting for something to touch it off.

      Lee

    • Anonymous
      May 19, 2006 at 10:08 pm

      I am not really sure what the case was that my GBS followed. I had my teeth cleaned one month exactly from my hospitalization. My Doctor’s seem to think it was because of a sinus infection that I had but did not go to the doctor for. Being a smoker that probably make any infection hard to detect and being busy around the house I probably was ignoring any visits to the doctor.

    • Anonymous
      May 19, 2006 at 10:44 pm

      In the five weeks previous to my first gbs symptoms, I had a flu vaccine, I had the flu, and suspiciously I ate at a casino buffet seven days before my first symptoms appeared. I never felt ill after the buffet. It could be all, some, or none of the above that caused my gbs-but one thing for sure is I will never get a vaccine again if possible and will never eat a questionable meal.

    • Anonymous
      May 20, 2006 at 10:08 am

      I was one of the cases that didn’t have a specific cause. I hadn’t been sick at all. I just started going numb and then going weak. Then I was on life support. No cause.

      Tonya

    • Anonymous
      May 20, 2006 at 8:33 pm

      Glad to hear your mother is doing well, Donna. Positive reinforcement and family support are irreplaceable.

      Onset of my GBS was caused by pulmonary/upper respiratory problems. I am severe asthmatic with COPD and I believe pulmonary problems can exacerbate some existing GBS residuals.

      Regards,
      Marge

    • Anonymous
      May 20, 2006 at 9:11 pm

      My trigger was a Hep A/Hep B booster shoot on 19 Oct…on 24 Oct I started my day out with pain and tingling ending in GBS diagnosis in Dec after paralysis.

    • Anonymous
      May 20, 2006 at 11:03 pm

      I was originally Dx with GBS on in April 4th of 2002, & told I was the mildest case of GBS they had ever seen. But by April 27, (even though I had had 5 PP)I had virtually become a quad, but never comletely paralyzed, although I did lose all feeling blow the neck. It wasn’t until the middle of May that Mayo changed my Dx to CIDP, when I had had 5 IVIG & was still getting worse. For CIDP this was considered a very rapid onset, as well as an extremely severe case.

      The consensus at both hospitals was that my CIDP was caused by an upper respiratory infection (walking pneumonia) that I had battled all that winter. So I disagree that CIDP cannot be caused by an infection. Jules, has your doctor given you a sural nerve biospy, an EMG, or a spinal tap to rule out CIDP? Because if it is actually CIDP, then there are so many more options for treatment, than just labeling it PN. But as long as you keep improving I guess what’s in a name.
      Pam

    • Anonymous
      May 21, 2006 at 12:56 pm

      I still wear my blue bracelet ‘Find a cure for GBS/CIDP’
      Love to all

      Val

    • Anonymous
      May 21, 2006 at 3:21 pm

      Hi and glad to see the old format has returned.

      I got my GBS from a tetanus shot in 2000. I am one of the few people I know (and there are many) who filed a claim with the Childhood Vaccine Compensation Program and actually won. Most cases are dumped due to lack of evidence. Flu shots were added to the program, however, I am not sure if a retroactive date was designated or if any of the filing rules are different. In order to “apply” for the program, you must have a qualified vaccine attorney who is dedicated to this specific type of case. The Department of Health and Human Services has a huge number of attorneys specifically assigned to prove any individual wrong–and they usually do.

      Let me know if anyone needs any further info about the program. Most of the details are still stuck with me after all this time.

      Take care and stay healthy, šŸ˜Ž

    • Anonymous
      May 21, 2006 at 8:17 pm

      Upper resp. infection was the slow burn but some bacteria (I can’t spell or say) that only grows in the colon of a chicken is what nailed me.

    • Anonymous
      May 21, 2006 at 9:04 pm

      Viral gastroenteritis one week previous was reckoned as the cause

    • Anonymous
      May 22, 2006 at 6:12 pm

      Hello everyone. It’s good to have contact with old friends once more.

      The six months prior to GBS were very stressful, attending college, working night shift and having all my childhood vaccines repeated. The military hospital required positive titers for everything before hiring clinical workers. I had a long history of low back problems with surgery six years before and was experiencing a flare up that did not respond to NSAIDS or steroids. So the neuro had an anesthesiologist inject a mix of drugs into the area of my spinal canal surrounding the L4-5 vertebra. Two days later I developed numbness in my hands and feet and two days after that I could no longer walk. Two weeks later I was paralyzed and without feeling (but as we all know in terrible pain). It took almost a month to get a diagnosis.

      God bless you all,

      Deb

    • Anonymous
      May 22, 2006 at 8:53 pm

      Like Tonya, I too had no reason for this attack. The only thing I could relate it to was a bee sting between my toes about a month before. But all neuros seem to shun that as a cause. So who knows?
      Mary Ann

    • Anonymous
      May 24, 2006 at 9:28 am

      My husband John’s GBS (then rediagnosed as CIDP) was caused by two doses of Lymerix vaccine….better he should have gotten Lyme Disease!

    • Anonymous
      May 25, 2006 at 9:37 am

      But they have no idea what caused it. The only thing that was found in all the bloodwork and evals was that her liver enzymes were quite elevated. But even with that, there is nothing that they could tell us that would be ‘text-book’ triggers. She was not sick beforehand, had not eaten anything out of the ordinary, not received any vaccinations for over a year, nothing. At the time it was quite frustrating, but we’ve come to deal with it.

      It took almost a week worth of seeing doctors at two clinics to finally get her admitted to the hospital and then diagnosed after two attempts at a spinal tap…..will never forget the first when they refused to sedate her…..talk about cruel and unusual punishment!!! šŸ˜” She has vivid memories of that still. It’s been almost 3 years which is hard to imagine too. It comes on so fast, and the healing is so slow….and then you look back and think ‘wow, where has the time gone?’

    • Anonymous
      May 25, 2006 at 12:18 pm

      Jan and all,

      The Flu shot (trivalent influenza vaccine) was added to the Vaccine Injury Compensation Program July 1, 2005. There is an eight year retroactive window.

      What does this mean? Anyone that received a flu shot on or after July 1, 1997, and had injury as a result can file a claim with the Vaccine Injury Compensation Program.

      Jethro