Guillain-Barré Syndrome: The Three French Words That Changed My Life

Guillain-Barré Syndrome: The Three French Words That Changed My Life

Guillain-Barré Syndrome: The Three French Words That Changed My Life.

Noun. Guillain-Barré Syndrome

Guil·lain–Bar·ré Syndrome \ˌgē-ˌlan-ˌbä-ˈrā-, ˌgē-yaⁿ-\ GEE-ann Bar-Ray

An uncommon form of polyneuritis of unknown cause characterised by rapid onset muscle weakness, loss or altered sensation, and paralysis.

Origin

Named after French Neurologists Georges Guillain and Jean Alexandre Barré in 1916.

Impact

Life-altering.

This illness changed the course of my life, taking everything that was familiar and turning it completely on its head.

Tell me a story…

I vividly remember the moment that I realised something was seriously wrong inside my body.

November 11 2005. Remembrance Day

I was twenty-four years old.

It was a Friday night. I was out with some friends for dinner when I suddenly started slurring my speech.

Most people wouldn’t find that unusual for a Friday night.

There is one critical difference here: I’d been drinking soda water all evening.

As I stared at my reflection in the bathroom mirror, eyes streaming, vision alternating between double and blurred, struggling to get my mouth to obey my brain’s commands, I tried to quell the rapidly rising feeling of panic.

It all went downhill from there.

Diagnosed with a life-threatening case of Guillain-Barré Syndrome, an autoimmune system disorder that attacks the peripheral nervous system, within three days I went from being a carefree twenty-four-year-old to a critically ill twenty-four-year-old, jumping into the record books with one of the worst cases of Guillain-Barré Syndrome my treating hospital had seen in 10 years.

Lying in a bed in the hospital’s critical care unit, my body systematically shutting down.

Seemingly not content with getting ‘mainstream’ Guillain-Barré Syndrome, I went for its rare cousin, the Miller Fisher Variant, aka ‘Upside Down Guillain-Barré Syndrome.’

The main difference between the two cousins is that the first nerve groups to be affected by Miller Fisher are those in the head, typically resulting in paralysis of the eye muscles, before descending the body. Paralysis in ‘mainstream’ Guillain-Barré Syndrome typically begins in the legs before ascending the body. There is also abnormal muscle coordination (tick!) and the absence of deep tendon reflexes (tick!) with the Miller Fisher Variant.

I experienced full body paralysis.

My optic nerve was (temporarily) damaged. I had light sensitivity and double vision in both eyes. My blink reflex stopped working so my eyes had to be taped shut at night to prevent them from drying out.

I was fed using a nasogastric tube. And let me just say, the formula they feed you is NASTY! Worst. Gas. Ever!

I slurred my speech, making it very difficult to understand me.

There was the night where I thought I was going to drown in my own saliva because I couldn’t swallow or spit properly.

I was in an incredible amount of pain, barely able to stand a sheet covering my body.

There were days, which morphed into weeks, of uncertainty.

Guillain-Barrè Syndrome isn’t diagnosed based on a blood test, it’s on signs and symptoms and supported by tests such as Nerve Conduction Studies (I’ve been zapped a LOT!) and examination of cerebrospinal fluid through a lumbar puncture or spinal tap.

In the first couple of days of diagnosis, the doctors were pretty sure I had Guillain-Barrè Syndrome but they weren’t 100% certain.

They decided to treat me for it anyway, knowing that if they didn’t then there was a very real possibility that I may not survive.  

I had no control over what was happening. I had to trust that these doctors, these people whom I had only just met and yet essentially held my life in their hands, knew what they were doing.

I had to trust that this would all play out as they said (hoped!) it would.

I had to trust that I would eventually regain function in my body, to move again, to speak properly again.

That kind of trust, that level of reliance on another person(s) with your own life…that’s one of the scariest things you can ever experience.

And this was just the acute illness stage, never mind the recovery stage, which is still ongoing some 11 years later.

Guillain-Barrè Syndrome. Getting. Better. Slowly.

Turtles rule!

Now it’s your turn! Any other turtles in the house (aka Guillain-Barrè Syndrome fighter)? Do you know someone with Guillain-Barrè Syndrome? Share your experiences below.

May is Guillain-Barrè Syndrome Awareness Month.

Share this post using the hashtags #GBS or #GBSAwareness. Thank you!

All photos and content the property of Starbrite Warrior and Bree Hogan. Not to be reproduced without permission.

59 Responses to Guillain-Barré Syndrome: The Three French Words That Changed My Life

  1. I went into hospital 6 weeks ago at the beginning of May and was hospitalized for 3 weeks, then just got discharged from acute rehab after 3 weeks there on Friday. I am 32 years old, married with two little girls, super healthy, I never thought this would happen.

    After no one being able to work out what was wrong with me after 13 days in hospital (and Drs telling me there was “nothing wrong medically”) I was finally diagnosed with a rare variant of GBS, started in my face and spread through all my limbs.

    Currently my lower arms & hands, and right leg are still suffering paralysis and numbness, with polyneuropathy pain everywhere else and Migraines.

    I am struggling to adjust back home and was trying to find info for my family to help them understand. “Invisible illness” explains it perfectly for me, it feels nice that I am not alone in the world and that the struggle is real. How can I help my family adjust to something they cannot see?

    Hope I can come out of this and feel a warrior too!
    Amy

    • Hi Amy, it’s lovely to virtually ‘meet’ you.

      Thank you for taking the time to share some of your story on this page.

      I take it you were diagnosed with the Miller Fisher Variant? It starts in the face and moves down the body. That’s what I had. It’s a b*tch of a condition.

      I completely understand what you are experiencing with your residual symptoms. The numbness, paralysis, neuropathic pain. It’s all so familiar to me. If I could offer up one piece of advice, it would be to go extremely gentle on yourself. Don’t push your body. Allow it the time it needs to recover. I pushed myself and it really was to my detriment.

      If you want to talk a bit more please feel free to email me directly.

      Sending hugs, Xx

    • Hi Jennifer, there is no cure for Guillain-Barre Syndrome but they can give what is known as intravenous immunoglobulin therapy (IVIg) to help speed up recovery. I received IVIg in my case and lots of it. It was referred to as liquid gold by my neurologist.

  2. Thank you for sharing your story. I heard the name, but never knew what it was. I’m sure it was extremely terrifying to go through all of that. Glad to hear you’re recovering and educating others on your experience.

  3. Also heard of this name, so great that you can share a horrible experience to help others who may need the support or feel alone with it. Hope your recovery continues to go well. Take care.

    • Thank you for your best wishes for my ongoing recovery Gill. I hope that sharing my story can help other people living with GBS (including their friends/family) to feel less alone. To know that there is support out there.

  4. I came down with Guillain-Barre Syndrome in January 2005. Most people who didn’t know me before, are surprised when I tell them what I have been thru. To look at me you probably would just think I am a little clumsy at times. I am in so much pain all the time, you can’t see my pain, but it is there all the time.I wish I had someone to talk to who knows what I am going thru.

    • Hi Bette, thank you for sharing some of your GBS story with me. It sounds like you have had a very challenging journey. I can completely relate re: the chronic nerve pain, it really sucks!

      Living with an invisible illness can be really hard, particularly, as you say, when you look relatively healthy on the outside. The inside is a very different story! I’d encourage you to jump on my FB page to keep the interactions going (with myself and other people who live with invisible illness) and to join my newsletter so that we can stay in touch. Support is such an integral part of life and even more so when living with chronic illness.

      Stay strong, xx

    • There are lots of us who know. I have the same residual symptotims plus more from a bad case of Lyme disease distroying my nervous system. People on this site totally get it. Invisible illness is horrible.

  5. This story is 100% mirrored by my 4 year old daughter!! Gives me goosebumps to hear it explained in words how horrific it truly was for you and my daughter.

    • Oh Eva, my heart breaks for your little girl, so young to go through an experience like that. Thinking of you and your family and sending huge healing vibes xx

  6. I’d heard the name of this before, but never actually known what it is. Thank you for sharing your story and being brave enough to put it out there. That had to have been the scariest thing.

    • It was the scariest thing I have ever gone through in my life Angie. I had zero control over what was happening and I had to trust that my Doctors had the diagnosis right and that I would ultimately survive it. Thank you for reading my story. 🙂

  7. Thank you for sharing your story! It is nice to read and hear about other’s who are going through the same thing as me. Then I don’t feel like a crazy person!
    I am 24 year old, recently married girl from Nebraska. I have been ill since October 2015, but was not diagnosed until December 2015. For 3 months I had the craziest symptoms, hand and feet tingling, numbness sensation all over my arms-feet-legs-and hands. I felt like a crazy person because nobody knew what it was! I saw numerous doctors and still no answers until December. In January 2016, I came home from work for lunch and was not feeling well at all. I began to loose sensation of my arms and legs, and then was unable to move them. It was horrifying! I was then sent to the ER then the ICU and was hospitalized for 2 weeks while receiving 5 IVIG treatments. It did not go well. I got aseptic meningitis as a side effect, and had horrible and unbearable headaches. It took me months to recover and build my strength and walk again. I was just getting my life back to “normal”. In March I relapsed and was hospitalized again. This time I was diagnosed with CIDP after my 2nd spinal tap, more EMG nerve tests, and an MRI. The decision was to move forward with High-dose Methylprednisone Steroid Treatments, since I did not tolerate IVIG well before. They have been going well so far. The day after treatment I feel like a million bucks! I can actually walk fluidly and eat meals without my arms tiring. After 3 days or so, I start feeling weak, stiff in muscles, joint pain in my knees, and overall fatigue and exhaustion. I am doing PT and OT 2 times a week, exercising twice a day, and sitting in the hot tub makes a world of difference for me by loosening up my leg and arm muscles. Day to day is tough. I walk, but slowly and with limping sort of movements due to the stiffness and my arms are so weak I barely eat my whole meal without taking breaks. I keep questioning, is this my life now? I am on multiple medications and am still adjusting to my new was of life. I can see week to week improvements as I get stronger. I stay positive and have amazing support from my husband, family, and friends. CIDP is my life now, but I’ll push through once again and I am fighting back twice as hard!

    • Hi Elissa

      You are definitely not a crazy person. This shiz is very real!

      So you are the same age that I was when I became sick with GBS. What is it about being 24?!

      It must have been so scary for you to have the GBS symptoms for all those months, coming and going, but unable to get any answers as to why it was happening. I imagine the diagnosis, as scary as it was, came as a bit of a relief for you. At least you then knew what you were fighting.

      You certainly had a tough time of it in hospital with the meningitis and intolerance to the IVIG treatments. I’m glad to hear that they have found a treatment that provides some real benefit, although it would be nice if the ‘million buck’ feeling didn’t recede so quickly (e.g. after just 3 days). Seeing week to week improvements is really good, keep hold of that as it will help you get through the tough times to be able to know how far you have actually come.

      I was glad to read that you have an amazing support network as this is so crucial when living with chronic illness. Your attitude is amazing and it really will serve you well in your journey.

      Keep smiling and remember that turtles really do rule! Sending huge healing vibes your way, Bree xx

  8. In 4 days time it will be 7 years since my daughter was struck down by this terrible illness, she also had Miller Fisher Variant and still suffers daily from residual symptoms especially the chronic nerve pain. She was 3 at the time and spent her 4th birthday in PICU on life support. She was at nursery and happy on the Thursday, feeling a bit ‘not right’ on the Friday, early hours of Friday/Saturday she stopped breathing, just like that her body shut down. We are extremly lucky to still have her and I thank God every day for that. Even though she puts up with so much pain, tiredness, twitches, toilet problems and more she is always so determined to make the most of life that she just pushes herself to keep going, she is my inspriation and I am in awe of her every day. As it was May that we were first made aware of GBS in the most awful way (we had never heard of it before our daughter got ill) it seems even more appropriate to us that May is GBS awareness month. My heart goes out to all those who have been struck down with this horrendous condition and to their families too x

    • Oh gosh 3 years old when she was diagnosed Becky! I can’t imagine what you went through as her parent. It used to be an ‘older’ person’s condition, usually hitting people in their late 40’s, but now it’s getting wee little kiddies. I feel for your daughter with the ongoing nerve pain, I wouldn’t wish it on my worst enemy. She certainly sounds like a little warrior and is determined to make the best of things despite the symptoms she still lives with. What an inspiration! xx

  9. You are one of the strongest people I have the pleasure of knowing!! You have been through so much and you are still smiling! I love you Breezy ❤️

    • Beautiful words from a beautiful friend! Right back at ya with the love vibes Katie! If I could figure out how to do a heart emoticon on the computer I would totally heart you right now. Xx

    • Hi Angie, doctors believe my case of GBS was triggered from an undiagnosed case of Glandular Fever. Either that or Campylobacter as my blood work was apparently positive for that too. Double whammy!

    • Hi Laurel, I feel for you. Recovery is very slow but hopefully you regain all your function. Sending you healing vibes xx

  10. You’re so brave to share this with us and you’re also so incredibly strong! This must have been an awful experience but it’s good you’re bringing awareness to it. Hope you’re feeling better!

    Greta

    • Thank you so much Greta. It was a truly horrendous experience, both for myself and for my loved ones who watched it all unfold. I can’t imagine how my parents must have felt to be told their child’s life was in grave danger. I just remember the looks of extreme horror and panic flashing across their faces as they listened to the doctors describe what was going on. Just awful.

    • Thanks Beth. Yup the onset was super fast, I don’t know if it’s the same way for everyone who gets GBS, but it sure hit me between the eyes!

  11. GBS is really a scary thing! I’ve had two patients in the ICU for respiratory failure secodnary to GBS, so I’m glad you survived it. I also have another patient in clinic who has still go through physical therapy due to residual symptoms some 10 years later. Keep spreading the word on this syndrome, because other than the medical field, I’m not sure if that many people know about it.

    • Thanks Doctor Mike! 🙂 It really is a scary, scary condition. One which is sadly on the rise in terms of the number of people who get sick with it. I had never heard of it until I got sick, and neither had my Mum who is a nurse. I feel for your patient who is still going to physical therapy after 10 years. I’m basically in the same boat as I live with residual symptoms from GBS – chronic nerve pain being the biggie.

  12. That is a scary experience. I can’t imagine dealing with something like that when I was 24. You’re just starting your life and then learn that everything is going to be different than you planned. As always thanks for sharing your story.

    • Thank you for reading my story Dia. Your words are always uplifting. You’re right, my world was completely turned on it’s head at such a young age. But the scary thing is, 24 is no longer considered a rarity for GBS (it used to be associated with mainly the older generations eg. 40 or 50 plus). Now it’s hitting kiddies as young as 2! I just can’t fathom that and my heart breaks for them and their parents. So young.

  13. I can’t even imagine the fear you must have felt. Not knowing what was happening, and having to trust doctors that you didn’t even know. I’ve heard of this before, but never really knew what it was. I hope you continue to fight and recover, and I hope they keep researching and finding better ways to treat it.

    • Thank you for taking the time to read my story and leave a comment Shann Eva. It was definitely one of the scariest experiences of my life. I will continue to fight and do everything in my power to heal my body. Turtles rule!

  14. I knew Guillian-Barre was scary, but to read your account is terrifying. A professor at the college I’m at, her husband contracted/came down with/whatever the correct term is Guillian-Barre. He has no short term memory, but can function almost like he used to.

    • Hi Cori, I’m glad to hear that your friend’s husband has largely regained his functionality. That’s great news! I’m guessing that his short term memory has probably also been affected by the medications he was likely on? They definitely cause brain fog and short term memory lapses. Gah!

    • Thanks Carol. Yes I was very young to get Guillain-Barre Syndrome but unfortunately it is hitting people even younger than I was. I’ve heard of a number of kiddies (I’m talking 2 and 3 years old) coming down with horrific cases of GBS. My heart breaks for them and their families. This is why awareness and education is so important.

    • It was/is very scary Candy. I’m not surprised you haven’t heard of it; it’s a rare condition and not many people have until they or someone they know is affected by it.

  15. My dear friend and mother of four had GB in the 90’s. It was awful to watch. Four days in she was on life support and completely unable to move or breathe on her own. When she was at her worst, a man came into her room, a complete stranger. He was wearing bike riding garb and carrying a helmut. He told her that a year ago he was just like her and that day he rode his bike four miles to visit her. It gave her hope. She began to recover about four months later and by a year had some residual weakness but was able to do everything she did before. I am gLad you are on the mend. What a frightening experience!

    • Hi Linda, I can imagine how terrifying it was for you to watch your friend’s health decline so rapidly. It’s scary how fast GBS can progress. What a wonderful motivator for your friend in the man with the bike helmet. I imagine that it would have also offered her some comfort to know that it is possible to recover – maybe not always fully, but to a certain extent – from GBS. It gave her HOPE! And how wonderful to be able to round the story out by saying that she is largely ok today. Thank you for sharing this, xx

  16. My cousin at 17 years old was suddenly unable to walk after never having any sign of issues. There’s more to the story and I’m sure more than I even know, but Guillain-Barre was in discussion at some point but to this day (some 2-3 years? later), she still doesn’t have a set diagnosis.

    • Hi Katie, I feel for your cousin, to not have any definite answers about what happened can be equal parts frustrating and scary. You didn’t say in your comment, but I hope that she has recovered from that episode and is ok today.

    • I was a survivor of GBS IN 2009 WITH ASCENDING NUMBNESS AND PARALYSIS UP TO NAVAL. NO DIAPHRAGM INVOLVEMENT. 5 DAYS OF IVIG. Then sent to rehab. 6 months in long term rehab and home health rehab. I was able to get my life back close to before. I ended up of neuropathy in lower extremities and hands. I accepted my new life and returned to work which is in nursing but is behind a desk. But I have a second chapter which began around Easter this year (April ) My symptoms returned and started to progress up thru my chest. Eventually getting double vision but no facial paralysis. Of course, TX for urine infection at another local hosp. D/C’d home but I needed to see the experts and went to KU a large teaching hospital with a great neurology dept.Admitted and tested for everything but no GBS positives. Still gave me IVIG X 5 days. Home and healing. Working parttime need my insurance. No dx of Cidp just listed as acute polyneuritis.guess because of the long time between episodes.this was my greatest fear. NOW I need to put it in the past.using a cane for better balance. Neuropathy pain bad but increased my gabapentin and Norco at night,melatonin for sleep.i hope this helps. Double vision gone and chest tightness decreased. God is good.I have a bad immune system, crohns, osteoarthritis.By the way got original GBS from Flu vaccine.

      • Oh gosh Patricia, I can’t even begin to imagine how you must have felt to get a relapse of GBS. That has always been a huge fear of mine, even though I understand relapses are quite rare. The thought of going through it all over again…sends shudders down my spine. Sending you huge healing vibes.

        I have heard a few people who got GBS from the flu vac. Doctors believe mine was triggered from an undiagnosed case of Glandular Fever. Either that or Campylobacter as my blood work was apparently positive for that too.

      • Thank you for sharing Bree, being a warrior is a great way to fight disease.
        Old wisdom says that our thinking affects our immune system. That’s why courage and strength, positive thinking is what gets us out of the weak victim mode.
        One lady wrote how alone she felt. Too bad we cannot share locations on here, or we might find real life friends with same symptoms, in cur own
        neighborhoods.
        I’m so glad you got better Bree and are here to encourage others now. kudos as always!!!!

        • Thanks Dagmar. 🙂

          I am a firm believer that our thinking affects our immune system at a cellular level. The body is such a complex, amazing thing and our thoughts, well, they can be pretty powerful!

          Chronic illness can be very isolating. The online world is helping to breakdown some of that isolation but it still very much exists. My hope is that this blog, and other support blogs like it, will help people to feel less alone.

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