I hear that all the time. People will ask me how I got the scar on my neck, or will say they heard that I had a rare disease, and ask what I had. When I tell them I had GBS, not many people will say they know what that is. Guillain-Barre syndrome is not a well-known illness at all. The first time I myself heard the words Guillain-Barre, was when I was being told I might have it. Less than 8 hours before that, I was a healthy 26 year old. It had started with a tingly finger, a pain in my neck and weakness in my legs. By the time I was at the hospital I could barely walk anymore. My neurologist told me they would need to monitor me over the next little while to see how bad I got. No big deal. I was sick, 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. 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, our immune system immediately starts fighting off an infection (such as a virus or bacteria). With me, my body saw an attack 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 me; my immune system reacted incorrectly. Unfortunately it’s impossible to say why one persons’ body reacts this way, when thousands don’t.
So what sort of things can trigger GBS? While it’s impossible to pinpoint, (and doctors will rarely say exactly what it was) I myself have met people whose cases of GBS came on a few weeks after they had the flu, a stomach bug, a virus, during pregnancy, after giving birth and even from stress. It has also came on for others who have had surgery, a flu shot, other vaccines, an epidural, and the Zika Virus. For me, it came on shortly after I gave birth. I had also had a C-section, an epidural and then the flu a week later, so it’s hard to say exactly what it was that triggered my GBS.
As the illness starts to progress, and as the immune system begins to attack the nerves, it starts 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 are then unable to transmit a signal, which causes the muscles to lose their ability to respond to commands. Essentially, weakness starts to spread throughout your body, slowly paralyzing you.
One of the very first symptoms of GBS is usually tingling and weakness, which typically starts in the hands or feet and works its way inwards. When the doctor first saw me, my arms and legs were very weak, and I no longer had any reflexes, which 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 official 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.
My case ended up being quite severe – the paralysis spread to most of my body, which paralyzed my diaphragm and affected my ability to breathe on my own – so I needed to breathe through a machine for 2 ½ months. However this doesn’t always happen. Only about 30% of GBS cases require mechanical ventilation and need to be in ICU. Some people with minor GBS don’t even require hospitalization – they improve quickly, and recover within weeks. In others cases, the paralysis may be 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, 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 other body functions. My blood pressure, my heart rate and body temperature were all dangerously high for a very long time which is another reason I was in ICU. Because I was paralyzed, I could not go to the washroom without the help of a catheter and many medications. And because I was hooked up to a machine to breathe, I could not talk or eat. I communicated to my family by mouthing words, and was fed through a tube in my stomach.
When a person is paralyzed in bed with GBS, it is not only physically painful, it is also very emotionally challenging. Some experience such severe pain that can be very difficult to treat. The stress of being bedridden, in pain, having other people completely take care of you, and not knowing if you are ever going to get better, can cause severe anxiety and depression. Many patients believe they are dying, or feel hopeless and wish they would die. Most GBS patients are treated with some form of anxiety medication and anti-depressants.
Although there is no cure, the myelin sheathe around the nerves do start to regrow – as long as the damage is not too severe. In minor GBS cases, re-myelination occurs and recovery is rapid. In more severe cases, the axon within the nerves is damaged and recovery depends on regeneration of the tissue. Usually, specialists say it takes an inch a month for the nerves to regrow. That is why GBS is often called Get Better Slowly. In general, the only thing that will help a patient improve is time. However there are treatments that are provided to try to help speed up recovery. The two most common treatments for GBS are IVIG and Plasmapheresis. IVIG is a process that involves removing the plasma from your blood and replacing it with new plasma (with new antibodies), and Plasmapheresis is a process that involves removing blood from your body and “cleaning” the plasma before putting it back into your body. I had both of these treatments.
The other treatment that almost all GBS patients require is physiotherapy. As the nerves start to come back and as movement is regained, the muscles in the body require intense therapy to strengthen them to a point of use again. The first thing that I had to learn how to do when I started to improve was breathing on my own. I practiced this by spending a few minutes a day off the ventilator and slowly increased it as time went on until I was breathing on my own again. Then it was my hands and arms, followed by my core and torso, then my feet and legs. Full time therapy at a rehab hospital is quite common, (as is being in a wheelchair for some time) and patients need to strengthen their muscles until they can learn how to eat with utensils, how to brush their teeth, how to pick up objects, and other day to day activities. Eventually they may be strong enough to get out of the wheelchair and learn how to walk with a cane, then walk with a walker, and then walk on their own. This timeframe typically span over the course of a few months to a few years. For me, it was about 6 months before I was walking on my own again. I have met those that it took only a week or two, and others who are still learning 7+ years later.
Although a large majority of patients do make an almost complete recovery by two years after onset, 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. Many experience fatigue. 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, and attribute it to my young age at the time of my diagnosis. Thankfully, my residuals are fairly minor.
Because of the fact that it was my own immune system that malfunctioned, many people, including myself, have asked: if it reacted that way in the past, can it react that way again? The answer unfortunately, is yes, there is a chance that it could happen again. But the chance of recurrence is only about 5-10%. However because of that, I have made the personal decision not to get the flu shot or other vaccines that have been linked to GBS. And with it coming on so quickly after I gave birth, I have also decided not to have any more children. Even if the chance of recurrence is extremely low, and there are no guarantees that these things could trigger it again, that risk is just not worth it to me.
Guillain-Barre is quite unknown, but it is not as rare as most people think. It effects about 1-2 in every 100,000 people a year. So in a city the size of Edmonton, Alberta, 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 really know how to care for me. My own family doctor has never seen a case of GBS in his whole career. As I mentioned before, many people go undiagnosed for some time because of health care professional’s lack of experience with it. It is very important to recognize the signs early on, and it’s important for our medical staff to know what they are dealing with and how to properly handle it. And I as I continue on in my life now, I can’t help but feel privileged to be able to promote awareness on Guillain-Barre syndrome. And I hope you found this post useful and will share it with others!!
To learn more about Holly’s Journey with GBS – Check out her YouTube video here.