NeuroTalk Support Groups - severe Guillain-Barre syndrome anybody?

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- - severe Guillain-Barre syndrome anybody? (https://www.neurotalk.org/peripheral-neuropathy/83268-severe-guillain-barre-syndrome.html)

severe Guillain-Barre syndrome anybody?

:)I would like to discuss any experiences you have had with Guillain-barre syndrome, how bad you had it, etc.

Please read my response under the IVIG

Thread... Maybe you could tell us all more about what all is/has been happening to you? There are a LOT of good folks with brains here who can help in many ways. Do read the 'stickies' -also called 'Important Links' - there's lots of good stuff there! Just click on any 'blue' reference site.

Keep up the reading and the research! - j

Quote:

Originally Posted by prairiemary (Post 491341)

:)I would like to discuss any experiences you have had with Guillain-barre syndrome, how bad you had it, etc.

Quote:

Originally Posted by dahlek (Post 491675)

dahlek, did i say something to offend? if so, then very sorry, will do better.

Hi prairiemary.

We have two friends who had Guillain Barre Syndrome. The one got it after having had the Swine Flu vaccine. She turned out fine enough.

The other one got it when his immune system was run down with so much stress, a bad cold, etc. Too much on the plate. The only thing he could do was blink his eyes. He did come back but not to being as he was before. He is limited some now as to what he does. It really changed his life.

Hope this helps.

Thanks for the info,Kitt, I very rarely get to hear from anyone who has had G.B.s, sorry your friend's life changed so much, its hard to accept for awhile, how it happens thru no fault of our own, just one of lifes many challenges.I could only move me eyes also, the rest just shut down.I either got it from a cold, or from eating chicken that had bacteria in it, likely the chicken, because they say if it was the chicken, then a person gets it very bad, and is paralysed for longer, with alot more problems, and are left with more remnents of the illness.No one really knows for sure, but it is a very scary thing to have to go thru.Does your friend come on here to talk? I would love to hear their story.

Hi prairiemary.

No, neither of them are on here. It is funny how things affect people differently. Hope all is well.

There are also at least several variants of Guillain Barre syndrome.

"Classic" Guillain Barre is an acute-onset autoimmune demyelinating ployneuropathy, but not everyone undergoes the same mechanism or the same symptoms. Some have patchier symptoms not requiring hospitalization' some do not experience demyelination, but an axonal attack, depending on just what molecular mimicry is going on from the atuoimmunity.

The leading theory behind my idiopathic acute-onset body-wide burning sensory neuropathy of April 2003, which has been slowly resolving over the years, is that it was such a variant, in which my activated immune system attacked my small, unmyelinated fibers--the ones that control the sensations of pain and temperature--due to these fibers having a molecular structure similar to a pathogen that my body mounted a response to. I neve had motor symptoms, but the small-fiber pain was very debilitating for weeks/months, until the Neurontin reached therapuetic levels in my system. Small fiber damage was confirmed by skin biopsy (after hundreds of other negative/normal tests, including spinal tap).

See:

http://neuromuscular.wustl.edu/antibody/gbs.htm

BTW, Chronic Inflammatory Demyelinating Polyneuropathy--CIDP for short--is thought to be the slower onset (sub-acute, such as Dahlek experienced) analog of Guillain Barre. Sometimes the two are difficult to distinguish.

I have a friend/neighbor who had GBS about 20 yrs ago.
IVIG was not an option then.

So she was given plasmapharesis treatments. I remember steroids were offered but I can't recall now if she had them too.

Hers occurred following chemo for breast cancer.
She had a mild virus after the chemo and then the GBS came.
Took 3 days to reach ICU status. She was paralyzed with the exception of breathing.

I would be very cautious with vaccines from now on as well.
We used to have a member on our older board, named Luke, and he acquired GBS from the Swine Flu vaccine. Had a terrible time with it, but is okay now. He was very vocal about not getting vaccines.

thanks,mrs.d, good to hear about someone else having it that bad. once i got out of the hospital, my neurologist told me to never get a flu vaccine, and i was even leary about letting my children get their vaccines, its a scary thing to go thru.

GBS-CIDP Foundation International

http://www.gbs-cidp.org/

"serving patients of GBS (Guillain -Barre syndrome) CIDP-Chronic Inflammatory Demyelinating PolyNeuropathy and Variants -with Support, Education and Research"

recommend checking out...

they have Directorys, articles, more Support /groups- listings, and a Forum -for GBS,CIDP, variants

also free newsletter (can sign up online)
toll free # to call for info, etc. -- 1 866-224-3301 -- "unfortunately the number can only be used in USA"

hope Site , info, etc. will help....

BEST wishes :grouphug: