I remember being in 6th grade and 11 years old, the first time we had to run the mile in PE. I was able to finish it easily, but afterwards I noticed I couldn’t see out of my right eye, everything was white. I cooled off and the problem subsided. I told my mom I thought I needed glasses, we went to the eye doctor and got some, and I never thought it was anything more than poor vision
About a year later in 7th grade, I noticed that when I looked down, a tingly feeling would shoot down from my neck to my spine. It wasn’t painful, but I went to a neurologist at 12 or 13 to be checked out for a possible pinched nerve. Long story short, my overwhelming phobia of needles prevented from getting the MRIs he requested.
I did not have any new issues until my sophomore year of high school at 16. I grew up in Vegas, and I was walking down the strip with family that was visiting from California. I started getting a strange feeling in my right leg, almost like I just couldn’t control it anymore. My ankle was rolling and I had to pull myself along railings until we made it back to the car. I was terrified and confused, but I was fine when we got home after the drive.
For months my mom and I struggled with my weak legs, a trip to the grocery store became impossible. We continued to blame the weakness on pinched nerves, maybe I just needed to gain weight, etc. Meanwhile I was googling all my symptoms and every search led me to MS. Not wanting this diagnosis probably encouraged me to avoid medical attention even longer.
Fast forward to late April of my sophomore year, I finally saw my primary care doctor to address my concerns. I remember telling her “I think I have MS” and her laughing at me and telling me 16 year olds don’t get MS. She referred us to a pediatric neurologist.
From this point forward everything seemed like a spinning teacup ride I couldn’t get off. The neuro told me my symptoms were very “specific” and ordered MRIs without contrast. We went back to see him about the images and suddenly my whole life turned upside down. I was 16 and I had agressive multiple sclerosis. I repeated the MRIs with contrast, and on the last day of sophomore year I was admitted to the hospital where I had a spinal tap and received inpatient IV steroids for five days. When discharged I was put on rebif for a year and a half and relapsed twice. I then tried LDN and relapsed switched to tecfidera, which still didn’t control my MS.
Today, I am just days away from receiving a life changing stem cell transplant at Northwestern Memorial Hospital.