Surviving Guillain-Barré syndrome
Some time ago I was diagnosed with Guillain-Barré and Miller Fisher overlap syndrome. This lottery disease that can affect anyone made me have to rest for 3 weeks, 9 days in the hospital and the rest at home.
On this birthday I decided to write a blog to commemorate my struggle against this disease, as well as share with others so that (don't let it happen, though) if they get it, they can immediately recognize the disease and get immediate treatment.
D-13
At that time, I was not very fit because I had the flu. My wife comforted me by inviting me to have dinner together near the office. We met at a mall near the office and chose a Japanese restaurant. After finishing my meal, I performed the ritual of smokers: taking a puff. "I'll take a puff outside first."
I walked forward, took out a cigarette and a lighter, and lit it. Before I could smoke the cigarette, my stomach hurt so much. I immediately walked quickly to the nearest toilet and spent about 20 minutes there. My body was covered in sweat and I felt a little weak. "Ah, I was surprised to eat so quickly," I thought to myself.
I returned to the restaurant and we went home shortly after.
D-12 to D-1
My stomach became super sensitive for the next dozen days. Every time after eating, there was something a little wrong with the food that made me have to go to the toilet. My mainstay Norit was also not very effective.
Hari-H
After coming home from the office, I decided to play a game that I had just bought. I played until I suddenly had a migraine on my right side. I rarely have migraines, so this made me suspicious. "Gosh, you must have played too long," I thought and it turned out it was only 9 pm. "Maybe this is a sign that I should go to bed right away."
I tried to sleep but the migraine got worse and I felt tingling in the same area. The harder I tried to sleep, the more I couldn't sleep. Finally I opened ChatGPT to consult.
ChatGPT accompanied me chatting all night until I finally had to go to the toilet. When I accidentally looked in the mirror in the toilet, I saw that the right side of my face was being pulled. I tried to open my right eye but it felt like I had been hit. Strangely, if I slapped my cheek, I didn't feel anything.
It was already 11 pm. Consultation with ChatGPT also became more frightening because there were issues with Bell's palsy, transient ischemic attack, stroke, and so on. I decided to go to the emergency room and my wife woke up hearing me being too noisy. "I want to go to the emergency room, okay," I said and explained my anxiety. My wife calmed me down and asked me to try to sleep and go to the hospital the next morning.
D+1
We finally went to see a neurologist at a local hospital. The doctor said it was probably a stroke, but the symptoms on my face didn’t make the diagnosis because his eyes should be open, not closed. He gave me medication to ease the symptoms and, “if it gets worse, come back here.”
Suddenly at 4 pm my face was no longer tense, and I hadn’t even taken the medicine. However, just in case, I took it after dinner.
D+2 to D+4
Luckily that week there was a long weekend, so I spent time resting at home.
Even though I had rested for 3 days, I felt more and more tired. I felt tingling in my right hand and foot, even tremors in my right hand. My vision also became foggy and double.
Consultation with ChatGPT made me decide to see the doctor the next day.
D+5
I met the doctor and explained my condition that was not getting better. The doctor said it was normal because of the recovery period and gave me vitamins to strengthen my body. He said there was nothing to worry about.
D+6 to D+8
The doctor's explanation and the vitamins he gave me made me brave enough to go back to work. Unfortunately, I felt my condition getting worse during the three days of work.
Not satisfied with the doctor's consultation that did not provide an answer, I tried to find another doctor.
My choice fell on a neurologist at another hospital. At first I avoided her because I was afraid of remembering my father who was treated by her. But I remembered, don't shoot the messenger, and I thought it would be better because she could see it more broadly: there were hereditary factors and so on.
D+9
I met the doctor and explained all my conditions. Her answer scared me, “You need to be treated immediately.” However, due to various reasons, I could only be treated 2 days later. The doctor agreed and said I could go through the emergency room. She also prepared various notes for the emergency room staff when I came later.
D+11
I went to the emergency room and was immediately examined in various ways, so many that they even had to prick 4 points to draw blood. I also underwent an MRI and a heart recording.
After the tests were completed, I was admitted to the inpatient room. Suddenly my right hand and leg became weak. I couldn't open the bathroom door, I couldn't walk smoothly. If I wanted to stand up, I couldn't use my right leg to support and push my body. My right leg felt very weak and difficult for me to lift. For example, if I was lying down, I could lift my leg 90 degrees, but I couldn't do it halfway. My right eye was getting foggy. In addition, I also had difficulty swallowing.
Finally, the doctor came and said that I was being treated with an indication of stroke even though the symptoms of swallowing and the disturbances in my face and eyes were contradictory to stroke. She suggested that I consult other specialists and do various therapies to restore the function of the weakened right muscle.
D+13
I have done various therapies and consultations with other specialists and it seems that my condition is stable. After a few days of treatment and nothing aggravating, the doctor said I could go home the next day.
D+14
I went through the morning with enthusiasm because that day I was allowed to go home. When I woke up, I immediately did the “homework” from the therapist that I had to do in my free time. I was shocked when I couldn’t lift my left leg. My left eye vision was also foggy and double.
I immediately called the nurse to report my latest condition. She called the doctor and the doctor advised me to undergo a CT scan and electromyography (EMG).
The CT scan results did not indicate anything, but the EMG suggested that I might have Guillain-Barré syndrome (GBS). The doctor asked me to have a lumbar puncture test to confirm the diagnosis.
D+15
Lumbar puncture is a very scary procedure. I lay on my side and bent both my legs to my stomach. The doctor applied anesthesia to my lower back and then inserted a needle long enough to remove cerebrospinal fluid. When the needle was inserted and trying to find the right spot, wow... The pain was still vivid for weeks later.
After the results of the lumbar puncture came out, the doctor came and explained that the weakness in my body was not due to a stroke. She said I tested positive for Guillain-Barré syndrome (GBS), a rare disease that occurs in 1 case per 100 thousand people each year, and Miller Fisher syndrome (MFS), 1 in 1 million people. What I experienced, Guillain-Barré and Miller Fisher overlap syndrome, is even rarer, 1 in 2 million people.
The doctor explained about this disease. GBS attacks the motor organs such as the hands and feet, while MFS attacks the face and eyes. She asked me to think back to what could have triggered it, “maybe a respiratory or digestive infection in the 2 weeks before the first symptoms?” I remembered the case on D-13. She then explained about the phases of this disease, namely the first 2-4 weeks are usually the decline phase, then stagnant, and 6 months to 1 year of recovery.
I was asked to stay in the hospital for the next few days to be on guard and observed.
D+16 to D+18
Even though the verdict was scary, I tried to stay enthusiastic. I routinely did exercises and therapy so that my nerves could remember that I still had muscles. On the eighteenth day, the doctor came and asked me to do small activities such as lifting my arms, walking, and so on. She felt that my condition had stagnated and allowed me to go home the next day.SheHe also asked me to have regular check-ups with various specialists and to continue following the therapy schedule.
D+19 to D+50
I always follow the recommended therapy, up to 2 times a week. I regularly consult with various specialists, from medical rehabilitation to nutrition. In addition, I was also given various medicines, and various treatments such as laser and ultrasound. My wife even took the initiative to register me for hydrotherapy.
I tried to exercise regularly. Initially, I could only walk for 15 minutes, and even then the furthest was 0.5 km. Over time, I became stronger at walking, both in terms of distance, duration, and gradient. An achievement that I am proud of is successfully climbing 30 meters, and walking 2.5 km without a break.
My progress was quite good on the fiftieth day so the doctor decided that I did not need to do physiotherapy anymore. Controls with all specialists (except neurologists) are also no longer necessary.
Now
Now I feel that my condition has returned to normal, faster than the average doctor or references I have read. I have also changed my lifestyle and diet to prevent GBS/MFS from recurring.
In every sadness there is certainly happiness. This disease slapped me so that I would want to live healthily. The strict diet, therapy, and exercise that I did made me get back on the right track.
My cholesterol used to be very high, but now it is normal. I also stopped smoking and no longer have high blood pressure. My "normal" blood pressure used to be above 130/90, now it is stable at 110/70. My blood test results are all normal, which used to almost always have anomalies. More importantly, I managed to lose weight. From 74 to 66 kilograms.
In addition, I also found out more about this disease. I have no history of autoimmune or nerve, so the arrival of this disease made me wonder. From chatting with ChatGPT and reading journals as an amateur, could it be because of COVID-19?
Hopefully my story can help explain this lottery disease. For more information about GBS, these references can be used as references: