It started just over a month ago. I had just finished my first year at Laurier, and a friend and I were driving back through St. Louis and Chicago to my home in Edmonton. It was going to be the perfect start to a great summer, a nice little trip before I got to see all my friends and family.
Nobody likes it when plans are changed by unforeseen circumstances. You get yourself so excited about something, and then you have to forget those expectations and adapt. It could be a flat tire, bad weather, or in this case, a very rare disease.
We drove 12 hours straight form Niagara Falls to St. Louis. We made great timing, and enjoyed the night exploring downtown. The next morning I woke up and my feet were tingling, and felt like they were asleep. I didn’t think too much of it, and just assumed it was because I was cooped up in the car all day. The tingling sensation did not go away, but I wasn’t worried. I thought that once we finished the trip and were no longer driving, that it would go away. Four days later, we arrived in Edmonton. But it did not go away, and it would only get worse.
Now, I know having your feet tingle and losing movement in your toes might not seem that bad, but how about losing your taste? You will never realize how horrible that is until it happens. It was Tuesday night, my second day back in Edmonton, and I went out for some food with some friends. I ordered a Pepsi, and it tasted horrible, so I had another one. The second one was no better. I complained to the waitress and told her the Pepsi was flat. She told me I was wrong. I settled with a water, and ordered some tacos. They also tasted horrible, and now I started to wonder what was going on.
I was beginning to get worried, my symptoms were not getting better, and now most foods had almost no flavor at all. I limped when I walked, and had no strength in my legs at all. My friend Nathan joked that I might have MS, which stands for Multiple Sclerosis, and at the time we thought that was funny. Friday morning I woke up and had trouble moving my face, and by the end of the night couldn’t say certain words properly. I tried to stay as calm as I could, and decided in the morning I would go to the doctor.
By the morning I had lost almost all movement in my face. I couldn’t smile or wink, and could barely speak. You could not tell when I was laughing, and I wasn’t even able to fully close my eyelids. I was involuntarily doing the Undertaker’s trademark look, where his eyes roll up in the back of his head.
The doctor sent me to see a brain specialist right away. I was in Boyle visiting my parents, so I had a two hour drive to Edmonton to see the specialist. That was easily the weirdest and scariest drive to Edmonton I’ve ever experienced. I tried to stay positive, but hey, I watched 50-50. You think you have a migraine, and boom, the doctor tells you it’s cancer.
It’s a cliche that life is short, and you should live every day to the fullest. But nothing can ever prepare you for something like this. You start to look back on your whole life, and think constantly of worst case scenarios. The worst part is not knowing what you have and what is going to happen. You just try to live your life like normal, but all the while are aware that something is very wrong. I relied strongly in this time on my faith in God, and on the love and support I received from my closest friends and family.
Luckily, I did not have cancer. They initially diagnosed me with MS, and Nathan and I were no longer laughing. Two days, ten doctors, and what seems like 100 tests later, I was officially diagnosed with Guillain-Barre Syndrome. I wasn’t sure if I should be relieved by that or not, seeing as I have never heard of GB in my life. In fact, most people haven’t, and only one in 100,000 people get it.
Guillain-Barre is when your immune system attacks your nerves. It is usually called by some kind of an infection, or stomach flu, but they do not know for sure what caused it in this case. I was sick for a day about a month before all this happened, so the doctors think that could be related. It usually starts with loss of feeling and numbness in the extremities, and soon progresses to paralysis of the face. If not treated in time, it can even result in respiratory problems. Lucky for me, it does have a very high recovery rate.
So I don’t have cancer, and don’t have MS; things are starting to look pretty good. But then the doctor told me it will take eight months to a year for all my nerves to grow back and for things to be normal. It’s hard enough going a week without being able to taste and speak, but now I have to deal with this for a whole year? I lost 20 pounds the first week alone. It’s crazy how little you care about eating once food stops tasting good.
I only had to spend one night in the hospital, which was awesome, because hospitals kind of suck. But I did have to get five IV treatments. Eventually I was cleared to not have to come back to the hospital, and while I was thankful for that, I was still very disappointed. I just wanted to work and enjoy my summer, and instead I had to adapt to my new reality. Imagine how thrilled I was at the thought of going back to Laurier like this. I had friends calling me saying they heard I was back in town and that we need to meet up. And I would say, “Yeah for sure. I just got out of the hospital and can’t speak or eat. But sounds good, can’t wait!”
A couple days passed, and I started noticing improvements. By the end of the week I could speak clearly and my taste was fully back! Unfortunately, so were those 20 pounds. By the end of the next week I had 90% of the function and strength back in my legs and feet.
It has now been a month since I finished treatment at the hospital, and save for a very faint tingling in a couple toes, I am as healthy as ever. How did I recover so fast when the doctor said it could take so long? Who knows, but I’ll take it. All I can do is thank God that I’m OK, and keep living life. But the truth is that I am better off for having gone through this. It opened my eyes to how quickly life can change, but also to how blessed I am to have the life and health that I do. The craziest part about it is how fast it happened, how concerned and worry I became, and how quickly it all went away. You may not be able to live every day like its your last, but you can certainly live each day being thankful for who you are and what you have.
2 thoughts on “The weirdest month of my life: My experience with Guillain-Barre Syndrome”
That’s an amazing story- to have recovered so completely and so quickly. I had a variant of GBS in June this year called Miller Fisher syndrome. I got double vision, walking problems and lost my reflexes and got six days of IV treatments. I am still recovering, principally from fatigue. Did you at any point lose the ability to walk, or get double vision? And have you made 100 recovery, I mean with no fatigue from the experience? All the best, Roddy
Wow! What a crazy story. Thank God for faith filled, praying parents (esp. moms). Lord only knows where I would be today without my mother’s prayers. Glad to hear you are doing well.