My name is Francis and I’m from the Philippines. I am currently living and working as a nurse in Germany.
It started during the 4th week of January 2019. I had a severe headache that felt like a throbbing through my eyes and was very painful. It felt like my eyes were going to pop out. That day, I took Paracetamol every 4 hours, but it didn’t actually help to reduce the pain.
I had a fever so I went to the Neuro-Emergency room in our hospital to get checked. There, the doctor assessed my condition — they took blood samples, performed a lumbar puncture, and gave me an MRI scan. They prescribed me antibiotics and admitted me in order to be observed. At first they suspected bacterial or viral meningitis. They saw that my brain and spinal cord had a lot of lesions and it was severely inflamed.
I ended up being admitted for almost a month.
The first complication I experienced was with my eyesight. At first it was my right eye that couldn’t see well, then eventually both were affected. Everything was blurry and cloudy; then there were times when there was nothing but darkness. It came to a point when I couldn’t even read the messages on my phone nor the signs on the wall. Later on, my balance coordination was affected as well. I couldn’t walk properly. My body felt like all the weight was piled up on the left part of my body. Looking back, I can’t believe I actually got through what seemed to be a perpetual life struggle for me.
The doctors started to give me IV Prednisone for 5 days. It actually helped me a bit, but my doctor decided to insert an IJ catheter to start on Plasmapheresis for 5 days as well. Their initial diagnosis was either ADEM or NMO. On my 3rd session, however, my situation got worse.
I started to have double vision again, recurring headaches, and the heavy feeling on my left side came back. I couldn’t stand, walk or eat without anyone supporting me. The right side of my face was completely numb. I had slurred speech and there came a time when my larynx closed for 3 seconds due to severe spasm because I had frequent hiccups. They started me on Prednisone again and tapered it slowly. My doctor couldn’t provide a final diagnosis and they could not rule out whether it was multiple sclerosis or a tumor.
I was moved to another hospital for a week for a brain biopsy. After the procedure, I was transferred back to my previous hospital and waited for a couple of weeks for the result of it.
When it finally arrived, I was really glad that it was not multiple sclerosis. But the question remained — what was it?
They took more blood samples and perfomed another lumbar puncture. They sent the result to another hospital to verify what my condition actually was. They found out that I had high levels of the MOG antibody. Even they couldn’t believe it since it was exceedingly rare, so they sought for a second opinion from a well known Neuro hospital. The doctors at this hospital ordered that I should start taking Rituximab therapy for 2 sessions every 2 weeks. That was my initial dose. My neurologist told me that I should take this every 6 months for 2 years. Every month, I have to monitor my blood count and have an MRI scan to monitor the improvements.
Currently, I am on the road to recovery. No relapses, just experiencing fatigue from time to time, especially when I have a lot of work. I started to change my diet, and I now prioritize food which consist of anti-inflammatory aspects.
By the way, my mom came to take care of me during my illness. All I can say is, I could not have gone through this alone. I thank God above for without Him, I probably would not be here, imparting you a glimpse of what I went through. I would like to give thanks to all the people, the numerous doctors, and other people whom I have met during this experience, who helped me either in a small or big way. I am really blessed to have all of you in my life.