Guillain-Barré Syndrome – never heard of it?

You probably haven’t. It is estimated that only 1 in every 100,000 people experience Guillain-Barré Syndrome (GBS). For those who do know what it is, there is probably a friend or family member who has been diagnosed with GBS.

This is a great informational source: Guillain-Barré Syndrome for Laypeople

Of those who experience Guillain Barre, only 5% have a recurring episode (excluding those diagnosed with the chronic form). My mom is truly a rare person; that makes her one of very few people to fall into this category. We always knew she was special 🙂

I first heard the term “Guillain-Barré Syndrome” when I was 8 years old. My mom, 31 or 32 years old at the time, had Guillain Barre. (That was 20 years ago and I still have trouble spelling and pronouncing the name!) I remember being called to the principal’s office in 3rd grade with my sister, worried sick that she had done something to get both of us in trouble! I remember he sat us down and told us something about our mom passing out at work and being taken to the hospital, that someone else would be picking us up from school, and that we could sit in his office until they came to pick us up. I don’t remember much of what followed, but my mom describes it as a long, difficult 6-8 months. She was eventually diagnosed with Guillain Barre, and sent home to lay in bed until her strength returned. There were no treatments for Guillain Barre in 1992; at least none that she could access.

Her strength did return, and she no longer had Guillain Barre; it is not considered a long-term or chronic disease like Parkinson’s or MS, rather an acute but short term “syndrome” usually brought on by a virus or infection (My mom had neither).

Soon subsequent “weird” (rare) health issues followed, and Guillain Barre became something rarely discussed, and if so in past tense. In the following 20 years, from my recollection, my mom had: hypoglycemia, gastroparesis (her stomach was paralyzed for 7 years, then started working again without treatment), breast cancer, an acoustic neuroma that caused deafness in one ear….and definitely some other stuff I am forgetting. The woman doesn’t get colds, or the flu, or sinus infections- just rare stuff! Each “illness” was treated separately and basically in a silo; no one has identified any correlations between any of her health issues. Of them, breast cancer is the only one to be considered “genetic,” and she had a test done a few years ago that showed she did not have the “breast cancer gene.”

Back to the present….on Mother’s Day of 2012, my mom’s legs gave out beneath her & she had to try 3 times to get herself off of the ground. This is someone who was literally hopscotching with her OT patients 2 weeks prior. She went to the doctor & was sent to the hospital where she was again diagnosed with Gillain Barre & stayed for about 2 weeks; luckily treatment is now available – she received 2 huge doses of “IVIG” – basically other (healthy) people’s immunoglobins from their plasma pumped into your system via IV.

Since it is so rare, people almost always ask me “what’s that?” when I tell them that my mom has Guillain Barre. My answer has always been very vague; I understand very little about GBS. However, I am definitely aware of its existence.  I found this great “guide” online today that I feel compelled to share to hopefully help someone else better understand Guillian Barre, at least the few pieces of it that doctors and researchers understand. Click below to download the PDF.

Guillain-Barré Syndrome for Laypeople from the GBS-CIDP International Organization (http://www.gbs-cidp.org/)

Do you know someone who has or has had Guillain Barre? If so, I’d love to hear any suggestions or personal stories that you are willing to share….

Guillain-Barre Syndrome survivor

7 thoughts on “Guillain-Barré Syndrome – never heard of it?

  1. Thanks so much for the update on your Mom, I had no idea! We will be out of town till august 13th and I will call her then, Aimee

  2. Today I was looking for some blogs on GBS and found you. So glad that your mom is ok. I too was diagnosed with it 4 yrs ago and it was horrible. My story is similiar to your moms in that I didn’t have the flu or any other virus before getting it. My doctor said that sometimes people get a virus and don’t know it. Before I even knew anything was wrong that summer I kept having the sensation you would have if say a blade of grass or hair was tickling your skin. For me, I felt that on my toes and I remember I kept looking down to see if there was something there. A couple weeks after that started was when the tingling in my toes and fingers started. In the past couple of weeks I’ve begun to have that sensation again but this time in my fingers. Which brings me to today and is why I was wondering if anyone else ever had that sensation prior to a GBS diagnosis?? I don’t have any tingling or any other symptons and hope I don’t get any. But, like your mom having had other health issues, I’ve had some weird immune system issues and I’m convinced there has to be a correlation. When I was 20 my immune system attacked my hair and made it all fall out. I’m RH neg blood type and so that attacks pregnancy. It took me about two years after GBS to stop looking behind me as I never wanted to have that again. I’m just concerned now because of the above mentioned issues that have recently started. Any thoughts on that??

    Thanks.

    • Did the tingling start in your toes/legs the first time then spread to your upper body? And this time is it only in fingers? My understanding is that GBS usually (which definitely doesn’t mean always!) starts in the lower extremities and moves up the body. Also, I think an easy self pre-test is to check your reflexes? I know both times my mom had absolutely no reflexes in her knees/elbows. Good luck 🙂

    • hi my name is tracy i was diagnosed with guillain barre syndrome jan 2013 it started a few weeks before with tingling in my feet and hands and and then i could not walk was in hospital for 10 days had 3 bags of ivig and wheel chair bound for three weeks then a walker then a cane am finally able to walk myself but still have tingling of hands and feet but so thankful i am walking hoping it will get better down the road but one thing i notice the most is i get really tired quickly hope that goes away soon also.

      • Tracy- glad to hear you are walking by yourself- that is a huge milestone! My mom is still unable to walk without assistance….she has been getting IVIG treatment every 3-4 weeks since last May. I think getting tired easily is a common symptom; my mom can usually only work on something for 20-30 minutes before needing a break.

        If you don’t mind me asking, how old are you? Just curious because my mom was 32 when she was diagnosed the first time and her recovery was much quicker….the doctors still aren’t sure if her current episode is related to the first, or if it never actually went away and was just dormant for 20 years. Her doctors don’t seem to know much about GBS…

      • I am 40 now i was 32 at the time

  3. So where do i start Nov 26 2005 i was great was dancing and having fun with My daughter and her friends that was a saturday. Sunday Morning Nov 27 woke felt sick like i had the flu had a weird cough later that night and became sick to my stomach so told my husband i was going to go to the couch. Went down heel from there woke up about 5 am Monday Nov 28 picked up my cell called in to work went to talk and my speech was slurred, hung up the phone called my husband in the next room do not recall a whole lt that day after that. Next thing i know I am in a hospital can’t see and On a Ventilator and was paralyzed.was in the hospital for 2 months and 2yrs of physical therapy 2 foot surgeris and now 6 screw and to metal plates in my ankel. They say My System Completely shut down. So I was starting like my system was an infant stage awesome. So here i am 2012 and having really bad problems withh my back so bad where there are days i cnat lift my feet left foot went completely numb just a few days ago felt like there was sand in my foot and they have no clue what the problem is. So I am here searching for anyone that has had GBS and has hand any of these symptoms. I am deperate for answers.

    p.s Don’t get me wrong i know i am truly blessed to be alive I have a ton of Faith would just like to know what it is.

    T.K

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