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My Encounter With Guillain-Barré Syndrome
A hospitalization story with a happy ending
The neurologist’s secretary handed me an envelope. “Delayed impulse response indicating acute polyneuropathy.” I stared into the floor for several seconds. I had tested positive for Guillain-Barré Syndrome.
The onset
When I woke up on December 8th, 2017, I noticed both my hands were numb and tingling. That’s odd, I thought. Maybe I had adopted a bad sleeping pose. When I got up, I nearly fell flat on my face — my legs weren’t responding normally, either. At first, I found it amusing: I had been dealing with the flu the whole week, so I figured my weakness was an unusual bodily response to it.
That day I ate out with my girlfriend, who was adamant my symptoms weren’t flu-related and that I should see a doctor. Then, it happened. As I stood up from the table, my legs betrayed me. I lost balance and fell backward, crashing on a table where a couple was having lunch. I went red with sheer embarrassment, and my girlfriend’s face was the epitome of horror.
I’ll be okay, I thought. Tomorrow morning, this madness will be over.
I was wrong. The following morning the tingling and unresponsiveness in my limbs were even worse. When I tried to write something down, it was like using my non-dominant hand. Going up and down the stairs felt like walking along a tightrope. I was beginning to feel nervous.
The diagnosis
Reluctantly, I went to the hospital. Tingling, numbness, weakness, partially unresponsive limbs, and no knee-jerk reflex. The doctors said it looked like Guillain-Barré Syndrome, and if that was the case, I’d need to be transferred to another hospital, as they didn’t have the equipment or the medicine for its treatment.
That raised a huge red flag inside me. What kind of condition could not be treated in a regular hospital? Phone in hand, I began looking up information on this Guillain-Barré thing. What I found horrified me.
- Guillain-Barré Syndrome (GBS) is a rare disorder in which the immune system mistakenly attacks the myelin sheath of nerve cells, making neuro signals travel slowly or get lost altogether. As a result, normal muscle functioning is compromised, followed by a progressive paralysis.
- GBS affects 1 in every 100,000 people. No one knows exactly what triggers it, but it is usually preceded by a bacterial or viral infection, and in rarer cases, by surgery or vaccinations.
- GBS is a life-threatening condition. According to the World Health Organization, even in the best of settings, there’s a mortality rate of 3%-5%, as paralysis can rapidly reach the chest muscles, leading to heart failure or respiratory arrest.
- There is no known cure for it, but there are treatments that drastically speed up recovery time. This can take from weeks to years, and physical therapy is usually needed.
Despite having all the symptoms, I had to undergo multiple tests to determine whether I really had GBS, but all of them turned out inconclusive. By that time, three days had already passed, and my condition was worsening. I could not stand up or sit down without assistance, and walking to the restroom proved more challenging every time.
It was then that I was taken to a private neurologist clinic to have a Nerve Conduction Velocity test administered. Much to my dismay, the results confirmed the doctors’ suspicions. There was no mistake this time. I had GBS.
Up to that moment, I had been praying for a different result, but deep in my heart, I knew my hopes were nothing but wishful thinking, and the diagnosis letter in my hand was proof of it. Crestfallen and uncertain about my near future, I silently shed a few tears. I’d never been so worried before.
Transfer preparations were arranged. Before leaving, two people asked what my condition was. After explaining my situation, one of them nonchalantly said “Ah, yes. GBS. I know two people who had it. They died.” A nurse also said to me “Oh GBS… a cousin of mine had it about a year ago. He’s been in a wheelchair ever since.”
Those people at the hospital sure had a way with words.
The therapy
I was referred to another hospital where GBS treatment was available. Upon arrival, I was conducted to a ward where about thirty men were in observation, some of them on life-support.
By then, I was extremely weak, and I could barely feel my limbs. When dinner was served, I had to use both hands to lift my plate. Later on that night, on an excruciatingly long and slow walk to the restroom, I nearly fell several times, forward, backward, and sideways. I had the sensation that my whole body had rebelled against me, like I was being disembodied with every passing minute: GBS was a relentless and soul-crushing disease.
Treatment began early in the morning. I underwent intravenous immunoglobulin therapy (IVIg). Immunoglobulin is an antibody cocktail used to treat several health conditions and disorders, including GBS. No one knows exactly why it is effective against it, but it works nonetheless.
The ward was a grim place. Everyone had a lifeless look on their faces, and some were in terrible pain. There was a man with schizophrenia shouting all the time and having seizure-like fits whenever he was asleep. There was also a patient across the aisle who was looking directly at me all the time. A few hours later, two male nurses came and took him away: he had been dead for a while, and apparently, I was the last person he ever saw.
It wasn’t an isolated incident. Every day, two or three people in the ward kicked the bucket. Presumably, the hospital was short on personnel, and the doctors and nurses were so busy they didn’t have time to routinely check vital signs on every patient. It was the first time I’d seen death so close and so often, and I could feel the loss of every life around me.
The recovery
Prolonged bed rest began to take a toll on me, making me dizzy and depressed, and giving me terrible headaches. To counter these effects, I devised an exercise routine that also helped reactivate my arms and legs. In the evenings, when my hand was free from the IV drip, I would walk in the corridor. “Just doing exercise,” I said to nurses when they raised their eyebrows.
To everyone’s astonishment — mine included — this workout routine sped up my healing time. And so, by the end of the immunoglobulin therapy, I had already recovered about 75% of my strength, limb coordination, responsiveness, and mobility. On the ninth evening there, I was told I’d be discharged the following day.
Nights at the ward were boring, cold, and lonely, and the last one was no exception. However, I learned that loneliness is not necessarily a bad thing. When you’re in a hospital, you have plenty of time to reflect on your life and what you’re doing with it. It makes you appreciate the things you once took for granted — your health, mainly — and the people who love you and support you unconditionally.
I often thought of my girlfriend and her daughter. I missed them terribly. Along with my parents, my girlfriend had moved heaven and earth to be there during visiting hours, and she was always looking after me, even when she couldn’t physically be by my side. We often talked on the phone and she sent me tons of messages of love and support. I knew I had been blessed with a one-in-a-million woman I could count on, through thick and thin.
The decision
It was on that last night at the hospital that I made an important life decision, as part of a plan I wanted to execute the following day. So, in the morning, I walked up to the chief nurse in the ward — a stern-looking lady with a piercing gaze — and asked her the following question:
“Excuse me. The doctor said I’d be discharged today. What time can I go home?”
“Don’t count on that, Joe. The discharge order may be issued today, but the paperwork will take a while. Most likely, you’ll be leaving tomorrow morning.”
The next day in the morning? Absolutely not. I decided it was time for plan B: Appeal to her humanity and romantic side.
“Er, that will be a problem because my family’s having their annual Christmas party tonight. You see, my girlfriend’s going to be there and I want to use the occasion to pop the big question. And between you and me, I haven’t even bought a ring for her, so…”
“Oh, really?” she said, suddenly showing interest.
“Yes. I have to be discharged today, the earlier the better. I need time to get ready. Could you give me a hand with that? Pretty please, with sugar on top.”
It worked. There was a glint in her eyes and a smile on her face as she said, “I’ll see what I can do.” About three hours later, the same nurse who suggested not getting my hopes high was telling me I could go home at noon.
Now please, don’t get me wrong. I didn’t make any of that up. The day of my discharge actually coincided with my family’s annual Christmas celebration, and I honestly had decided to propose to my girlfriend. So, right after leaving the hospital, I went directly to a jewelry store to get a nice engagement ring. Then I headed home, shaved, and took the longest shower of my life.
That night, at my uncle’s house and surrounded by all of my father’s family, I took the microphone and thanked everyone for their support and prayers. Then, I called my girlfriend and, before she knew it, I had already dropped to one knee. Overcome with emotion at my proposal, she said yes, to the resounding applause from my relatives. Her daughter came running and the three of us stood together in a warm embrace for a while. A Christmas dinner and recovery celebration had suddenly turned into an engagement party.
The outcome
Most of my acquaintances scratch their heads at my quick recovery. Many are surprised that I present no long-lasting nerve and muscle damage. Some have even said that I’m a survivor, even though I didn’t reach critical condition and therefore I was never really close to dying.
In the end, there’s no before and after for me in terms of my physical state. I’m just as healthy now as I was before my encounter with GBS. But I won’t deny there’s something that changed in me after my short, yet meaningful, stay at the hospital.
My world was turned upside down for a few days, and that gave me a new perspective on life. I learned to take it a bit easier and to count my blessings. I learned that life can change in an instant, oftentimes without a warning. I learned that strength can be summoned even in the most hopeless of circumstances. And most importantly, I learned that times of hardship can lead to wonderful life-changing events.
It may not seem like a big deal now — many have had it much worse than me — but this experience marked a turning point in my life. One that still terrifies me, but I’m thankful to have been through, nonetheless. And as I get to have breakfast every morning with my wife and stepdaughter, I wouldn’t have had it any other way.
