A unique syndrome for a unique guy

I’ve always said I was a unique individual, and now I have the syndrome to prove it.

This is me right before being dismissed from a six-day stay at the hospital. You can see my right side of the face won’t turn up into a smile. Also notice the forehead won’t wrinkle as well.

Last week, I was diagnosed with Guillain-Barre syndrome, which affects about one out of every 100,000 people. By comparison, people born with their hearts on the wrong side of their chest are about one out of every 10,000 people. So it’s pretty rare.

I just got home yesterday after spending about six days in the hospital. And it’s something that could affect me for anywhere from two weeks to six months.

My right side of my face is paralyzed, for lack of a better word, and I find it difficult to climb stairs or run.

According to the National Institute of Neurological Disorders and Stroke, “Guillain-Barré syndrome is a disorder in which the body’s immune system attacks part of the peripheral nervous system.”

It started about a month ago when I had a weird two-day flu/cold. It was unlike any sickness I had before. I didn’t have a runny or stuffy nose. I didn’t have a cough, trouble breathing or a tickle in my throat. I wasn’t nauseous or had diarrhea. All I had was a complete loss of appetite and two days of exhaustion.

After that, I was still had a loss of appetite. I was eating less than I usually do. Normally, I eat four or five bowls of cereal for breakfast, then lunch, dinner and snacking throughout the day. But I was eating about one or two bowls of cereal, and then I wouldn’t be hungry again until supper. On the bright side, I cut down almost completely of all the junk food I used to eat.

Andy Griffith has had to deal with Guillain-Barre syndrome.

But I ended up losing about 20 pounds in that month. I was a touch overweight, but I think that was a little much.

As well, right after I got sick, I had numbness in two toes on each of my feet. I didn’t think much of it, because I could only tell when I wiggled my toes and when you think about it, how often do you do that?

It was last week when things started to get a little frightening. At first, it was my upper legs. They were exhausted. I need to hold myself onto the railing to get upstairs. I couldn’t run, at all. When I bent down to pick up one of my girls, I struggled to stand back up. That’s when I made an appointment with my family doctor.

He ordered a bunch of tests, but the day after the tests, my face went paralyzed. When I smile, the right side of my mouth won’t curl up, leaving me with more of a frightening half-smile. My right eye won’t shut tight. I can’t wrinkle my forehead on that side of my face.

My wife thought it was a stroke. I thought Bell’s Palsy. So we went to the hospital. After a series of tests, the informed me I had Guillain-Barre syndrome, and would need to spend at least five days in the hospital getting treatment.

This scared me for several reasons. One, I hate needles, and over the course of six days, I’ve been poked with more needles and IVs than I have in my entire life.

Second, I was worried for my wife and kids. My twin girls turned six months while I was in the hospital, and I couldn’t see them. We tried Skype a few times, but the wireless account at the hospital was brutal. I would be on for two minutes, and then kicked off.

I wanted to make sure the girls would be taken care of, and that my wife wouldn’t make herself exhausted worrying about me and taking care of the girls. Luckily, she has a lot of great family who live in Ottawa, and they pinched in a lot to make sure my wife was never alone to tend to two babies.

So with that, I was admitted to the hospital. Three days in the emergency ward because of a lack of beds, and then moved to the neurology department for the last three days.

I was injected with immunoglobulins once a day. The stuff is freezing, so it has to go into the body slowly. Each injection took about four to five hours. The rest of the day was just lying around being bored.

Now I’m released. It could take anywhere from two weeks to six months for my body to get back to normal. I had to step back from my ultimate team this summer, because I don’t know when I’ll be in shape to come back and start running again.

The prognosis is good. They told me I can’t get a flu shot again (this is a good thing, as I hate needles, remember?), as that may cause a recurrence. A lot of people have it a lot worse than I do. Guillain-Barre can affect the respiratory system, which means a lot of people who wind up in the hospital need a respirator to help them breathe.

I was a pretty mild case, so I’m thankful for that. It was still a scary situation.

And now, I’m just glad to be home.



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7 responses to “A unique syndrome for a unique guy

  1. Lora

    I’m so glad that you’re out of the hospital and will fully recover!

    Thinking of you and your family!

  2. Aunt Carol Ann & Uncle Rick

    We love you and know you’ll be 100% in no time.

  3. Hey Tom, GBS is scaaaary. Max had it after getting his 4 yr old vaccines…he had to learn to walk again.
    Long story, he’s fine now, and we’re forever thankful for that.
    We wish the same outcome for you.


  4. Sandi

    Glad to hear they caught yours in time. Mine came on about two weeks prior to the crisis point. I was never on a ventilator, but I was close. When I was admitted to the hospital they had a therapist sit with me for several hours to make sure I didn’t quit breathing altogether. That was four years ago and I have about 80% of my original function, and quite a bit of nerve pain. It may never go away, and fatigue has been my constant companion since then. Best wishes to you. Sandi

  5. Cheryl

    Wow, crazy! Glad to hear you’re okay and that it’s just a temporary thing …

  6. Megan

    I read you story and could easily relate to many things of which you had wrote about. I’m seventeen years old and was misdiagnosed the first time I had gone to the hospital. Mom thought I was having a stroke and the doctors that we had first gone to said it was Bell’s Paulsy since I couldn’t move only one side of my face. Thanksgiving day, I couldn’t move either side of my face and the bottom half of my body went numb. Being taken to a different hospital, I was told I had the same syndrome you do. However, I think my affects were worse. I was taken in for five days. I couldn’t feel pressure, texture, and it took effort to get words out. Till this day, I’ve been doing much better after the release. I still am weak in some areas and my face still can’t move. Lucky me, right? I’m just glad I can use humor to lighten the situation that I’m in :] I just wanted to know if you could update this blog/story when you can finally move your face because it’s frustrating the crap out of me on a daily basis to not know when I can. I figure if I can find someone who finally makes a face recovery, it’ll give me a hopeful idea of when I might be able to. Thanks :]

    • Hi Megan,

      I actually recovered from the face paralysis after a few days. I think it was about five days or so.

      But I never had Guillan-Barre Syndrome. I was misdiagnosed and actually had Lyme disease. One of the symptoms of Lyme is temporary partial face paralysis, hence the fast recovery. I did an update at https://theryancokeexperience.wordpress.com/2011/07/18/my-battle-with-lyme-disease/

      I actually have had friends who told me about their Guillan-Barre Syndrome after I wrote thus. One told me he was five or six years old when he got it, and was told he would never walk properly again. He had lost all feeling in his legs then it moved into his body and arms a couple of days later. He ended up being paralyzed from the neck down. He had to re-learn how to walk. He now plays sports and is one of the most athletic people I know and you would never know he battled anything like this. Another friend of mine had it at a young age as well, and has fully recovered and is also pretty athletic.

      Hopefully things go well for you in your battle. People can recover from GBS, so never give up hope.

      Good luck.

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