Guillain-Barré Syndrome is a disorder where the body’s immune system attacks the nervous system. It’s rare although it is becoming more common as the Zika virus is now believed to be one of the triggers for it. The other triggers are respiratory infections, gastrointestinal viruses, and surgery.
For me, the trigger was a respiratory infection that wouldn’t go away! The respiratory infection lasted two weeks and took two rounds of antibiotics to concede defeat. Following the second round of antibiotics, I noticed tingling in my hands and feet. The tingling felt like the pins and needles you get when your limbs fall asleep and you stomp or clap to wake them up. Only the tingling didn’t go away. This was on a Thursday.
On Friday, my hands and feet went numb. The tingling was annoying, but the numbness worried me. My flip flops would come off as I was walking because I couldn’t feel my feet other than the strange tingling. Using the internet, I looked up numbness and tingling in the hands and feet.
The search was not reassuring. Everything I read said to go to the hospital if you have numbness in your hands and feet as it could be a symptom of something serious. I hate to go to the doctor, much less the hospital.
My boyfriend, Jon, looked it up as well and messaged me that I had Guillain-Barré Syndrome. He was joking, but I messaged him back that it fit all of my symptoms. He said that if he was right, he would go to medical school because he was a medical prodigy.
Saturday morning, I went to the ER. This was a little nerve-wracking since I am in Taiwan and don’t speak Chinese. One of my amazing co-workers, Karen, went with me to help. The ER doctor asked me a few questions, checked my reflexes which were non-existent, and told me he thought I had Guillain-Barré Syndrome.
My first emotion was panic. Having read about it the night before, I knew that paralysis which could lead to breathing difficulties and being intubated were two results if the syndrome advanced that far. One of my biggest fears is not being able to breathe.
The ER doctor ordered some tests for the following week and sent me home.
I had Jon help monitor my symptoms throughout the weekend. I was nervous about suddenly having trouble breathing or not being able to walk.
Saturday afternoon, my face started to droop on one side; one of the symptoms of Guillain-Barre is Bells Palsy-like paralysis in the face.
Saturday night the pain began. I spent much of the night pacing my room in the awkward gait I had adopted since the numbness had gotten worse in my feet and legs, trying to get rid of the pain in my shoulders and hips.
By the end of Sunday, I was having difficulty using my arms and walking and, that night, the pain was extreme. I didn’t sleep at all because I could not find a position that was comfortable. I awkwardly paced and, toward morning, started to cry. Between the pain and the lack of sleep, I had nothing left.
I finally got in the shower at about 4:30 am, hoping hot water would give me some relief. I could barely lift my arms so washing my hair was impossible, but I stood under the hot water as long as I could. Getting out of the shower, I fell onto the bed absolutely exhausted.
“Are you going to the ER?” Jon asked from beside me.
Jon immediately got up, got showered, and helped me dress. We caught a taxi to the emergency room, and Jon had to help me get out of the taxi since I couldn’t push myself up from the low car. Once I got in to see the doctor, I was told to go to the National Taiwan University Hospital where they had the resources to provide treatment for Guillain-Barré Syndrome. I went in to work instead.
A few hours later, after organizing my work materials for an absence and with Karen in tow again, I went to NTU Hospital’s ER and was admitted. By now, I was tired and in pain and dealing with a healthcare system I didn’t understand.
Thankfully, I had Karen to help me navigate and talk to the doctors as they started doing tests to confirm the diagnosis and rule out anything else. I had reflex tests, an MRI, and finally a nerve conduction study. The doctor who performed the nerve conduction study cancelled all of my other tests as the nerve conduction study showed no sensory perception and lower motor nerve functions.
With the diagnosis confirmed, I notified my family and, after some back and forth, my mother said she was coming over as soon as possible.
My first night in the hospital, I slept in the hallway in the ER as there were no rooms available until the next day. The nurses had been instructed to help manage my pain so I was set up with an opioid drip that minimized the pain but caused me to vomit. So I am in the middle of the ER, surrounded by other sick people in hospital beds, low lights, exhausted as I still have not been able to sleep, vomiting into a plastic bag. This was how Karen found me when she arrived back at the ER early in the morning to see if I needed help.
Karen got a nurse who talked to a doctor and administered some medication to stop the vomiting. The new medication made me dizzy and sleepy, and I couldn’t think straight. This was the beginning of the worst day of this ordeal. I was taken to a hospital room, met with doctors who repeated the reflex test and given a spinal tap. The doctors told me that after the spinal tap, I would have to lie flat on my back for six hours.
Since I was still having extreme pain, I was given more pain medication. They did the spinal tap and told me to lie flat. I hadn’t eaten now for almost 24 hours and had been vomiting despite the anti-nausea medication. As soon as the spinal tap was completed, the doctors told me to try to eat something. I took one bite of a papaya and sat up almost immediately to vomit. The collective gasp of the doctors and Karen when I sat up was funny, but I was too miserable to laugh.
After throwing up the little bit of water and fruit in my stomach, I lay back down to begin six hours of lying flat and still with the pain in my hips and shoulders driving me crazy. You know when someone tells you that you can’t do something and that’s all you want to do? That’s how it was. The pain wasn’t the worst. It was knowing that I couldn’t sit up even if I wanted to.
Karen was still with me. Jon showed up during the second hour or so with a toothbrush and a few other essential items that I couldn’t use yet so now I started to obsess about brushing my teeth. At this point, I haven’t brushed my teeth, brushed my hair or taken a shower in 36 hours. I was nauseated, dirty, in pain, and jittery from lying in the same position.
Another co-worker, Ruru, arrived so Karen could go home. My co-workers made sure someone who spoke Chinese was with me during this critical time. Ruru brought me a fruit drink that I wasn’t able to drink. She talked to the nurses when they came in to check my vitals and kept Jon company as I lost my mind and complained from the bed. They distracted me the best they could, but I was obsessed with my own discomfort. At hour 4, I wasn’t sure I was going to make it the next two, but I knew I had to.
At hour 5, my bladder was about to burst so a nurse came in to catheterize me. Although I was nervous, it was surprisingly painless, but took forever to empty my bladder. I think the fact that I was numb helped make this process as easy as it was.
Jon left soon after and Ruru stayed until hour 6 was up. I wanted to jump up, but the nurse said to go slowly. Boy, was she right. I was incredibly dizzy from lying flat for that long. Shortly after, I had to get up to go to the bathroom again and needed help making it to the bathroom. Ruru helped support me as I made me way there and back to bed. She wanted to stay the night, but I insisted she leave.
During the night, although I wasn’t sleeping much, I began to feel better. I talked the doctors into a different anti-nausea medication that worked better and didn’t make me dizzy. I still had a lot of pain, but I felt like the numbness wasn’t as severe.
The next morning, the doctors came in to check on me and said they planned to start treatment that afternoon as the spinal tap showed higher protein levels, another confirmation of Guillain-Barré Syndrome. They wanted someone with me in case anything went wrong. As my mother would not be arriving until Thursday night, and this was Wednesday, I sent out an SOS message to my friends here in Taiwan and had several volunteer to come.
Jon brought me lunch as my stomach was starting to feel better, and, although the doctors were giving me intravenous parenteral nutrition, I was hungry and the doctors kept telling me I needed to eat.
The hospitals here are different than those in the US. The doctors and nurses are only there to provide medication and diagnoses. You can order meals for an additional fee, but they drop them in your room and you are responsible for figuring out a way to eat. The nurses never refilled my water for me or helped me go to the bathroom. My friends did all of this – and thank goodness for them! I was so weak and helpless at this point that I could barely brush my own teeth.
That afternoon, before starting my treatment, I told the doctors I felt like I was improving. They tested my reflexes and numbness, and the numbness had moved a little bit down my arms and legs. They agreed to hold off on the treatment until the next day to see if improvement continued. I was so relieved. My friends came by that night and brought me all kinds of treats and helped me take a shower. The nurses had not changed my sheets after the spinal tap so one of my friends got fresh sheets and changed my bed for me. I was sitting up and not nearly as numb. It was a good night.
By the time my mother arrived the following evening, the doctors had cancelled my treatment and I was definitely doing better. The pain was still pretty bad, but the numbness was continuing to move down my arms and legs and the tingling wasn’t as severe. I was walking and moving my arms more easily. At this point, I was only in the hospital for pain management and observation. They wanted to keep me until the following Monday when they would do another nerve conduction study to see if it showed improvement as well.
By Saturday, I was going stir-crazy in the hospital. I had moved from a private room to a shared room and it made a huge difference. My roommate had family with her 24 hours a day, and my mom was staying with me so we all had to take turns with showers and using the sink. The room was only quiet for brief moments between visitors and nurses and doctors seeing the two of us. Even during the night, the lights would come on and nurses would test one of us or my roommate would have a coughing spell. I told the doctors I wanted to check out, and they reluctantly agreed. Jon helped Mom and me pack up and head home.
Getting home was a huge relief! Although I was tired and still in pain, it helped just to be in my own place and able to have peace and quiet. I had to go back the following week for a follow-up nerve conduction study, but that was okay. I took brief walks every day for the next few days and every day was able to do a little more, have a little less pain, and be a little less exhausted. The follow-up nerve conduction study showed my sensory nerves were working again and my motor nerves were functioning at a higher level.
I went back to work Thursday. Work was hard, really hard. My co-workers helped as much as they could, but, as a teacher, I had to teach my own classes. I sat as much as possible, had the kids erase the board for me and do other small tasks, and I made it.
My mom stayed for a total of three weeks. She cleaned and did laundry for me when I would not have been able to take care of those tasks on my own. By the time she left, I was capable of doing everything, but my energy levels were still low and I would get minor pain if I did too much. We were able to do some site seeing, but it was limited. I still loved having her here.
It’s now been a little over eight weeks since my initial symptoms began, and I am finally back to normal. I started working out again this week and have been symptom and pain free for about two weeks. For whatever reason, my recovery began much earlier than usual with Guillain-Barre Syndrome and continued with no relapses. I am grateful that the doctor’s here diagnosed me so quickly and that I was able to get the help I needed. The care provided was exemplary.
Being in a foreign country, getting an illness like this where doctors couldn’t predict or keep me from getting worse, was scary. Guillain-Barre can cause paralysis and up to 30% of people need temporary help from a machine to breathe. I didn’t even have to have treatment and never reached full paralysis. When I was diagnosed, I didn’t read any accounts on the internet about anyone improving as quickly as I did; all I could find were the horror stories. I feel incredibly blessed to have recovered as quickly as I did and wanted to put it out there that sometimes Guillain-Barre doesn’t reach an advanced level.
I am grateful to everyone here in Taiwan who stepped up to help me – from coming with me to the ER, sitting with me in my room, bringing me pillows and blankets and goodies, and teaching my classes for me. I never felt alone in this, and I can never show everyone how much it meant.
I am grateful to Jon who supported me from the beginning, monitoring my symptoms carefully, helping me get to the ER, and checking daily throughout my hospital stay to make sure I had what I needed. I am, however, still waiting for him to fill out that application to medical school.
I am grateful to my mom who flew over from the US and navigated a foreign country with no warning.
I am grateful to everyone at home who sent their thoughts and prayers to me through Facebook and emails.
The value of a circle of supportive family and friends shouldn’t be underestimated. And good health is not something to take for granted. These experiences made me appreciate even more the people I have in my life and the fact that I normally have a fully-functioning body. If you are fortunate enough to have them, remember to take the time to appreciate both.