The story of Rifat
In April 2023, I first experienced symptoms of Miller Fisher syndrome, with swelling on the right side of my face and an inability to open my right eye. I had double vision and everything appeared cloudy. I visited a neurologist but didn’t receive any answers or treatment.
In the following days, I experienced pain and discomfort in my back, arms, and legs. My right arm and leg gradually lost strength. I sought a second opinion from another neurologist and was hospitalized. Initially, the doctor suspected a stroke and recommended observation and physical therapy. After three days, I was told I would be discharged the next day.
The following morning, I couldn’t move my legs, though my hands were slightly better. The doctor ordered several tests, including CT scans, blood tests, EMG, and a lumbar puncture. She confirmed I had both Guillain-Barré syndrome and Miller Fisher syndrome. I was discharged after two weeks, as there was no negative progression.
I spent months rebuilding my strength, starting with short walks. At first, I could only walk for five minutes, but eventually, I reached 20 minutes. I underwent physiotherapy, hydrotherapy, and followed a monitored diet. After several months and nearly depleting my savings, I regained my previous strength.
I thought I had a happy ending. I found a better-paying, less-stressful job, rebuilt my savings, and even went on my dream holiday, walking 20,000 steps a day.
In November 2024, I began to feel leg weakness and discomfort again. A visit to the hospital led to a suspicion of GBS-MFS, but they lacked the equipment for the necessary tests, but I was asked to stay for observation. After 7 days, I was discharged.
A few days later, the pain worsened, so I visited my neurologist. She suspected an autoimmune condition and ordered an ANA panel test, which showed one low-positive result. She referred me to an internist, who ordered an AIM panel test. By December 19, 2024, I was diagnosed with Polymyositis