I Was Diagnosed with PSPS on May 5th 2019. However started becoming practically paralyzed from the neck down starting January. Doctors in the pediatric setting hasn't dealt with a complex case considering I was already dealing with over 15 diagnosis before adding this cherry on top of the cake. After multiple testing ( Muscle biopsy, spinal tap, EMG, GAD Antibody testing) and visualizing physical signs all pointing towards SPS ( unable to expand diaphragm, multiple seizure-like episodes that would effect my muscles, bones,O2 and HR, loss of mobility, loss of vision, and so on. Doctors tried to tell me that it was all in my head and that I could control these things; Even with the abnormal testing and signs/symptoms. I had to keep my head up, faith strong and a smile on my face because although they may have made me suffer I learned how to encourage others going through similar circumstances. I also was able to meet some amazing nurses and doctors who pointed me in the right direction so I would be able to get some treatment. Although the journey of advocating to be seen and heard that "children get SPS as well", it allowed me to become closer to God and also find other unicorns/ zebras just like me!
share your story or email me. we would Love to help as much as we can ! #strongertogether