This is a sensitive subject with me. But, everyone needs to make their own decision. I refused the shot last year while I was in the hospital for IVIG load dose. The nurse looked at me funny and I asked her politely why she would want to give the flu shot to someone with a compromised auto-immune system? She went away.
In 1976 I and my wife stood in line and got the Swine Flu shot. She was okay.
I got the Swine Flu from it. I had never heard of GBS. Now, several years later, I have the chronic form of it. So the question becomes… When did my CIDP start? 17 years ago with slow onset symptoms? Or… In 1976 when I got the Flu from the shot ?
To be honest, I have not had a flu shot since 76. I would Never discourage anyone else from taking it, but feel it’s important that everyone thinks it through. Jeff
We can only voice our opinion, but each of us and anybody has to make up their own mind about getting the flu shot. I think you must research it though, talk to more then one doctor, listen to people like us, then decide.
I don’t know if the flu shot caused my CIDP, but I do believe that’s what put me in a wheelchair. I let the facts speak for themselves. I worked in a hospital so getting a flu shot was almost required. November 1997 I got my annual flu shot. March 1998, I was slowly becoming aware that something was wrong with me. November 1998, got flu shot again. Within a weeks time I lost my ability to walk. Diagnosed with CIDP December 1998. Diagnosing neurologist said never get flu shot again. Family doctor said no flu shot, walk in clinic said no flu shot.
Hi: Yeah, 10 days after flu shot, I was getting numb, and weaker,,,they iniatially treated me for lymmes disease…By about 15 days after flu and tetanus shot, I was pretty much paralyzed, and dx with gbs, in hospital given ivig and been battling ever since, but getting better…..deanop
I received my first and last flu shot back in Dec. ’96 they never officially stated I got GBS from it but was told never to get it again or any other immunizations. I believe me I never well.
I had GBS when I was in college in 1971 (full Blown) and I used to tell people that I had it before it was vogue, when a number of people developed it from the Swine Flu shot of 1976.
Last year my company offered the flu shot (I had one the previous 5 years) and I noticed that the second question on the form was whether you ever had GBS. Right there I decided to pass on getting the shot. I had to explain to all what GBS was about.
Ironically, I came down with my second bout of GBS 3 weeks later (worse than when I had it the first time). I was in the hospital from 10/26/06 to 1/12/07. When I saw the company nurse this year, he admitted that he was GLAD I did NOT take the shot last year.
The questionaire for this year’s flu shot again references GBS, so I will NOT be getting one!
I am post GBS may 2005 and am also to scared to get the flu shot. My Dr. understands the fear and doesn’t pressure me to get it. She has informed me if I come down with the slightest symtom of the flu to call her and she will prescibe Tamiflu.
While I was in the hospital almost all of the nurses and staff told me they don’t get the flu shot for fear of getting GBS.
I came down with my first symtom the day I had a colonoscopy and endoscopy. Needless to say I will probably never have either procedure again due to the fear factor of getting it again.
Hope this helped.
I just recently registered on the site, so this is my first time posting anything.
I had GBS while in college in 1971. My company offers the flu shot and I always took advantage of it. Last year was the first time that I saw a question asking ” did you ever have GBS?” That stopped me right in my tracks. I consulted with my doctor who said it would be ok. In the end, I decided NOT to take the shot & told co-workers what GBS was all about.
On 10/15/06, I went for my annual physical and was told everything looked good. One week later, while in my office, I began to feel numbness under my fingernails. By the time I went home it progressed into the hands and feet. Of course I knew it was happening again. I spent from 10/26/07 to 1/11/07 in the hospital. The recovery period was a lot longer than the first time. I have some residual effects this time, but did not the first time around.
Again, I’ve only recently found the site and through reading some of the posted “conversations”, I can see that there are others out there that understand what I have gone through.
When you come right down to it, the flu shot has to be an individual decision. As far as I’m concerned, I let my facts speak for themselves. I too worked in a hospital and the flu shop was almost like a command rather then a choice. I had my yearly flu shot in November 1997. I started becoming aware that something serious was wrong with me in March 1998. Not being diagnosed yet, I got the flu shot again in November 1998. About one week later I could no longer walk. I don’t know if any of us can prove that the flu shot causes GBS/CIDP, but I do believe that the flu shot in 11/98 triggered my CIDP enough to put me in a wheelchair. I myself would never get another flu shot, my decision, because the doctors can confuse us. My diagnosing neuro said “never get a flu shot”, yet my “treating” neuro (I went through many before I found him), said it’s better to get the flu shot and when I went to Phoenix symposium, all the doctors (very highly qualified doctors) on panel said it’s safe. My family doctor told me not to get it and a walk-in-clinic told me they wouldn’t give it to someone like me.
Gather as much information from here and searches as you can, then decide.
I just posted a response to the “Tamiflu” thread. I put a few alternative “suggestions” in there that would definately relate to you.
I have 3 kids and dread what they might bring home. I will get some suggestions from my dr. (immunologist/naturopath) on how they can avoid and handle colds and flus. I go back in – in 3 weeks.
I would not recommend the Olive Leaf extract though. A naturopath or immunologist could help your family. I doubt your child would go for the raw garlic either!
I have asthma and about three years ago, my doctor said I had to take the flu shot. I got deathly ill and ended up in the hospital. He started questioning me and when I told him that I had, had GBS/MFV, I was told to never take another flu shot. About two years ago, I took the pneumonia shot for the same reason by a different doctor. My arm broke out real red and was swollen. I made mention of the GBS/MFV, she made the same statement and that I was highly allergic to them.
Guillian Barre Syndrome
BRIDGEWATER: Somerset County Flu Clinic Tuesday
Bridgewater Courier News – Bridgewater,NJ,USA
…You must have a physician’ s approval to receive the vaccine if you are taking blood-thinning medication or have a history of multiple sclerosis or Guillian-Barre Syndrome.
see the following link for the entire story:
I have CIDP and I knew something that was becoming bad was wrong with me, but I wasn’t diagnosed yet, so I got my annual flu shot in 1998. ONE WEEK LATER, I was literally knocked off my feet and thereafter, could no longer walk. Also, I got my annual flu shot in November 1997 and four months later, what turned out to be CIDP started.
VERY INTERESTING! Yet the neurologists (who treat this) speaking at the symposium said it was safe. WHETHER YOU SHOULD GET THE FLU SHOT “HAS” TO BE YOUR OWN DECISION!!! TALK TO YOUR NEUROLOGIST, YOUR FAMILY DOCTOR, DO SOME RESEARCH ON IT, INQUIRE AT WALK-IN-CLINIC’S, THEN DECIDE.
I am 53 & have never had a flu shot in my life, & do not plan on getting one ever now. But in answer to your question how bad can it get. CIDP can get very bad unless treated with a regular maintenance program, like IVIG. I noticed in one of your other posts that you have had IVIG & are approved for more. But how long has it been between? Most who have the relapsing/remitting CIDP do well on regular IVIG infusions, like once a month or even less.
You ask how bad it can get? CIDP can be a very disabling condition for some. I was essentially a quad for 3 years after a rather sudden attack in March of 2002. It was so fast, I was dx with GBS for the first 3 months. I had no use of my hands, couldn’t walk at all, couldn’t lift my arms up, etc. & remained this way for a very long time. I am not trying to scare you, just letting you know it can get very bad, especially if one is not given regular treatments. I have just learned to live with a lot of pain, but I do think that you are getting the correct pain meds. Sometimes, our old norm becomes a new norm. I hope for you that it will just be a case of getting IVIG infusions more often…
maureen. i am 5 years post gbs. i have had the flu shot every year since my onset [B][I][U]PER MY PRIMARY AND MY NEUROLOGIST’S [/U][/I][/B]instructions. i too have asthma. i also get a pneumonia shot every 5 years. i have had NO ill effects from the shots. i also have NOT gotten the flu. alot of people on this site, do not agree with me about getting the flu shot, but i see a neuromuscular speicalist who wants me to be protected. he saved my life and i don’t think he’s going to put me in jeopardy now. stay well.
hi shannon. as you may have read earlier in this thread. i am 5 years post gbs and have had a flu shot every year with no complications whatsoever. i have since been talked out of future flu shots with proven documentation as to why i shouldn’t have it. keep using anti bacterial hand gel, both you and your fiance. i wear a mask when entering a medical facility or a closed area where there is no proper air circulation. gene recommends the over the counter product called airborne. both of you should eat well, take vitamin c zinc, etc. and you should both be ok. just be very careful.
both of you stay well. 😉
I’ve had Miller Fisher. When I posed the vaccination question to my Neurologist and Family physician the answer I got was, “probably not.” That is not definitive but it is enough for me. I would rather protect myself against Flu than chance Miller Fisher again. I do know that those who administer the Flu shot program in my area of Florida warn against it if you’ve had GBS.