The first sign that something was wrong was when I tried to urinate and couldn’t (Image: Getty Images / EyeEm)
The neurologist finished the exam and sat down in front of my hospital bed.
With a smile, he got to the point: “Have you ever heard of a disease called Guillain-Barré syndrome (GBS)?”
My blank stare indicated I hadn’t.
He continued: “GBS is a rare inflammatory disorder of the nerves. It attacks the muscles of your legs, arms, chest and face. We believe this is what is happening to you. We need to keep a close eye on you because it is “It’s a serious illness. It’s already affecting your hands and legs. If it’s lying on your chest, we’re going to have to put a fan on you.”
Finally, the previous weeks of mysterious and terrifying symptoms — sudden muscle weakness, double vision, exhaustion, and fluctuating blood pressure — made sense. Finally, he had a name.
Guillain-Barré Syndrome: A disease I had never heard of that affects less than two people in 100,000 each year and kills up to 10% of patients, according to rarediseases.org.
That was not exactly how I had planned my two-week vacation to escape the stress of my job as a news journalist in London.
I had been in Sligo, Ireland, with my family for two weeks, when I suffered such severe food poisoning that I ended up in the hospital dehydrated. After a few days with a drip, I was allowed home, on the road to recovery, or so I thought. In fact, things were about to get dramatically worse.
It started suddenly, with severe pain in the back of his neck. I soon vomited again and was taken to Sligo University Hospital with what we all assumed was another food poisoning attack.
The first sign that something was wrong was coming later that day when I tried to pee and I couldn’t. Surprised but not too worried, the doctors inserted a catheter: a rubber tube that reaches the bladder. (There is only one way to get it into your body: yes, that way). The suggestion now was that he had caught a urinary tract infection. A nuisance, but nothing to worry about.
But I was beginning to feel tired, exhausted, in fact, with such intense dizziness that I almost fainted. My blood pressure dropped dangerously every time I got up. I was transferred to neurology. At a glorious time in Hollywood, a new neurologist came into the room, looked at me once, and announced to his assembled colleagues, “I’m taking care of your case!”
For a few days I felt like a bit of a celebrity. The feeling quickly faded.
It was around this time that Guillain-Barré syndrome was first mentioned. It turned out that the disease he had had the week before had been caused by a particularly nasty insect called Campylobacter, a bacterial infection and one of the most common causes of GBS.
As soon as GBS was mentioned, I realized I couldn’t move my left toes. The next morning, he could not move his toes and could not walk. Then I was losing grip on my hands, my legs were numb and I could barely speak, all in a matter of hours.
GBS has some unique features, especially its speed. I was literally watching my limbs lose function for a few hours. It seemed to me that I was progressively paralyzed.
The GBS recovery process is unpredictable and the sequelae have been, in many ways, as bad as the disease itself.
In fact, this is what GBS does: Many patients end up with a ventilator when their chest muscles stop working.
While this was going on, I was subjected to all sorts of weird and wonderful tests while the doctors were trying to figure out what was going on. There were several MRI scans to see what was going on in my brain, “not much!” Came my family’s hilarious joke; then a scan to look at my upper spine.
It was followed by a lumbar puncture, also known as a spinal puncture, a procedure that involved inserting a needle into the spine to suck up the spinal fluid which is then tested for protein levels. Let me assure you it feels like you can imagine.
This was probably my hardest day in the hospital; being pushed and punctured by groups of doctors who admitted they had no idea what was happening to me.
It was the scariest time of my life and I cried almost every day. I spent my days chatting with friends on Whatsapp and watching football on the only TV in the room, anything to get my mind off what was going on in my body.
All sorts of illnesses were raised, from Lyme disease (spread by infected ticks, well) to multiple sclerosis. The problem was that each and every one of the tests I underwent turned out to be inconclusive. All of my symptoms pointed to GBS, but that’s why I was treated.
The standard treatment for suspected GBS, I was told, was a course of intravenous immunoglobulin, which is made from given blood that contains healthy antibodies and helps stop nerve damage.
Gradually, this did the trick, as after a few days I started to regain some strength in my hands. GBS is a strange condition for another reason: it is self-limiting. After soaking your body for days or weeks, it suddenly calms down and your nerves begin the slow recovery process. In a week, I could walk down the hospital hallway if someone grabbed my arm and two weeks later they let me go home.
All this was in November 2019, which seems like a lifetime. The GBS recovery process is unpredictable and the sequelae have been, in many ways, as bad as the disease itself. The last two years have been mentally exhausting. A long, arduous and often frustrating recovery process.
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The vast majority of people regain normal muscle strength in six months. For some, however, it may take years. I suffer from fatigue so much that it forced me to quit my job full time.
I can no longer run, which is hard to deal with as I was going to run every day, my legs hurt and my left hand is still weak.
Doctors have told me it could be another year, at least, before my body returns to normal. But I consider myself lucky. It could have been much worse, thanks to an illness I had never heard of, which I will never forget.
Do you have any stories you’d like to share? Contact us by emailing jess.austin@metro.co.uk.
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