I hear that quite often when I tell people I was diagnosed with GBS. The first time I even heard the words “Guillain-Barre” in my life, was less than two years ago when I was being told I might have it. Less than 8 hours before that moment, I had a tingly finger, a pain in my neck and weakness in my legs. But now I could barely walk. My neurologist said something about it being rare, about monitoring me over the next little while to see how bad I got. No big deal. I had some rare thing, they would give me medicine and I would go home and be fine. That’s what happens at the hospital, right? Wrong. There is NO CURE for Guillain-Barre syndrome.
In my book, “Happily Ever After” I told my side of the story, I explained what GBS did to me emotionally and physically over a year. I explained my feelings, my fears, the challenges I faced and the obstacles I overcame. But what I didn’t dive into as much is exactly what Guillain-Barre is. And as I continue trying to create awareness, I feel it is important to dig deeper into GBS. I am by no means a Doctor, but I hope that this blog helps explain it to you all a bit more.
Guillain-Barre syndrome is a disorder affecting the peripheral nervous system (the nerves that are not a part of the spinal cord or brain). GBS is caused by a reaction from the immune system. In a normal attack on our bodies (such as a virus or bacteria), our immune system immediately starts fighting off the infection. With me, my body saw an attack on my body (which is unknown – it could have been me giving birth to Casey, the epidural or C-section, or the flu I had, but they don’t know) and my immune system started to fight it off. The problem lies within my own immune system. My immune system continued to fight when it should have stopped. It overworked and after fighting what it needed to, it then started to attack my own body. People need to be aware that you don’t catch GBS, and it is not contagious. The disorder lies within my own body – MY immune system reacted incorrectly. Unfortunately it’s impossible to say why one persons’ body reacts this way when thousands don’t. But it is important that people know that these certain attacks do not cause GBS, they only trigger it.
As my immune system continued attacking my nerves, it started to damage the myelin sheathe around the nerve, or axon (basically, the nerve is a wire, and the myelin sheath is the plastic coating around the wire.) The nerves were unable to transmit a signal, which then caused my muscles to lose their ability to respond to commands. Essentially, I was paralyzed.
The most obvious symptom of GBS is tingling and weakness, which generally starts in the hands or feet and works its way upwards. When the doctor first saw me, he noted that I had no reflexes in my arms or legs. This made him think that I had GBS. A spinal tap was done to drain fluid from my spinal column to check the protein levels, (which are very high with GBS) and it was this procedure that lead to my diagnosis. I was very lucky that the Neurologist that saw me that night immediately had an idea of what was going on, and knew what test to complete. Unfortunately I have heard hundreds of stories of misdiagnosis, where patients go days or weeks before they finally find out what is going on.
Although my case was very severe in that I needed to be on a ventilator for months due to it affecting my breathing, this generally only happens in about 30% of GBS cases. Some people with very minor GBS do not require hospitalization – they improve quickly, and recover within weeks. In others cases, the paralysis is severe but only reaches as far as the waist – and the upper body remains unaffected. Either way, the majority of patients reach their weakest point around 2-3 weeks after their initial symptom- and then slowly start to recover. For me, I was unfortunate that the paralysis affected my entire body from the neck down and I did not start to recover for over 6 weeks.
Not only did it affect my nerves, it also affected my autonomic nervous system – the part of my body that controls blood pressure, heart rate, body temperature and bodily functions. This caused my body to go haywire and all of these dysfunctioned. I could not go to the washroom without the help of a catheter and many medications. And my blood pressure, heart rate and body temperature were all dangerously high for a very long time.
Although there is no cure, the myelin sheathe around the nerves does regrow- as long as the damage is not too severe. Like I said before, in minor GBS cases, re-myelination occurs and recovery is rapid. But in more severe cases, the axon within the nerves is damaged and recovery depends on regeneration of the tissue. Generally, they say it takes an inch a month for the nerves to regrow. That is why GBS is often called Get Better Slowly, as it takes so long. Because I had such a severe case, we were told that it would be at least two years before I would walk again, as that is how long it would take for regrowth in my nerves to happen. They were wrong, and miraculously I was walking within 5 months.
Another thing that many people don’t know about GBS is that although most patients do make an almost complete recovery, there are those that do not. About 20% of patients are left with permanent residuals. Some people are unable to write or type as their fine motor skills never return and some require walking aids such as braces, canes, walkers and even wheelchairs. I was always told that I would eventually recover, and I am very fortunate that I was able to get back to my life. It absolutely breaks my heart when I meet others that are still affected by GBS years later. I consider myself extremely lucky. Thankfully, the only place where my nerves have not returned to normal is in my sense of touch in my fingertips and toes, and in the muscles in my ankles.
Because of the fact that it was MY immune system that malfunctioned, many people INCLUDING myself have wondered: if it reacted that way in the past, can it react that way again? The answer unfortunately, is yes. There is always a chance that it could happen again. BUT the chance is very rare, being about 5-10%. I personally do not get the flu shot because of the chance it could be a trigger for me (it is definitely linked to many GBS cases) . Of course I will always wonder if it was being pregnant, giving birth, the C-section or the epidural that was the trigger for GBS in me, and because of that fear, I have already made the decision not to have more children. That risk is just not worth it to me, even if the chance of recurrence is so low.
Guillain-Barre is very unknown, but it is not as rare as you may think. It effects about 1-2 in every 100,000 people a year. So in a city the size of Edmonton, it would effect on average 10 people a year. Still, most people have never heard of GBS. Some doctors and nurses I had, had never dealt with it before and some of them did not know how exactly to care for me. My aim is to change that. I want Gulllain-Barre to become a household name – not because it becomes more common, but because it is important for people to recognize the signs early on, and it’s important for our medical staff to know what they are dealing with and how to handle it. And I as I continue on with my journey I can’t help but feel privileged to be able to promote awareness on Guillain-Barre syndrome even more, and I hope you found this blog post useful.
If you or someone you know is looking for more information or support on Guillain-Barre syndrome, and are in the Alberta area, please email me at firstname.lastname@example.org. I am a liaison with the GBS Foundation and would love to support you in any way that I can.
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