One morning in October of 2013, I remember feeling a sharp pain in my right eye when I would try to read and the letters were very blurry. It was in the midst of a very busy semester of in college, so I considered it to be a symptom of long hours of studying, hundreds of miles of driving each week, and the lack of sleep. After the pain continued to increase, I decided to make an appointment with my general optometrist. Upon examination, the optometrist noted decreased color vision and referred me to a neuro-ophthamologist. Unfortunately, since I had not been previously diagnosed with MS, the neuro-ophthamologist said he had no reason to suspect optic neuritis and shrugged it off and did nothing more.
One week later, I was admitted to the hospital after symptoms progressed to severe vision loss in my right eye and beginning in the left eye. I went from having 20/20 vision, to being diagnosed legally blind within 2 weeks. I could see large objects right in front of my left eye, and only light perception in the right. I lost all peripheral vision. I was also suffering from light sensitivity, severe brain fog, memory loss, limb numbness and weakness, and fatigue. The neurologist prescribed five days of intravenous corticosteroids and I was released from the hospital to go home with no improvement. Shuffled from one doctor to another; all scratching their heads unsure of what caused the vision loss. I was tested for all kinds of illnesses, but everything came back negative. By this point, I was terrified and felt completely lost and defeated.
In December, I was referred to an eye specialist at Bascom Palmer in Miami, FL. Dr. Guy narrowed it down to 2 diseases, tested me for both and finally, 2 months after the initial attack, I had a diagnosis— Neuromyelitis Optica (NMO). Although relieved to have a diagnosis, I was devastated to find out there wasn’t a cure for the disease.
I was driven to Bascom Palmer in Miami, a five-hour ride, every couple weeks for treatment. We tried intravenous immunoglobulin (IVIG), which caused me to have a severe head ache for days. I was put on a preventive medication called Rituximab, which is an immunosuppressant used to treat certain cancers, like non-Hodgkin’s Lymphoma. Although it is labeled as an experimental treatment, Rituximab is currently the leading preventative medication for NMO. Despite the treatment, I continued to have an attack every other month for the next six months.
In June of 2014, I woke up in the middle of the night, only a few hours after going to sleep, with intense pain in my legs and unable to walk. After a month in the hospital, receiving IV corticoid steroids and plasma exchange treatment and going through inpatient rehabilitation, I left in a wheelchair with no recovery from the attack. It was said that since I had not already shown improvement, the chances that I would walk again were little to none. I continued with outpatient therapy twice a week for over six months, until my insurance stopped covering it. I did not let that stop me from continuing my hard work. I made sure to do the leg exercises and got up to walk short laps around my living room at least once a day. Before I knew it I was walking with AFOs (ankle foot othosis) and a walker. By the next year, I was walking short distances without any aids at all.
It has been almost two and a half years since my last severe attack. I am still visually impaired and continue to suffer from residual symptoms including; decreased feeling in my hands and legs, chronic pain, fatigue, extreme heat sensitivity that affects my vision and causes weakness in the right side of my body. I receive plasma exchange treatment every few months to help prevent attacks and take multiple medications daily for the residual symptoms. On good days, I walk over two miles and enjoy weight training and yoga classes a few times a week. On the bad days, I do my best to shower and feed myself. I’ve learn to take it one day at a time.
For a while, I told myself this was just a little detour in life; that I would get back on my feet and be back on my career path in no time. Finally, I realized life wasn’t going to just pause for me to catch up. I had to move forward and enjoy the life I was given. That was a huge turning point in my journey. As I fought my battle with NMO, I fell in love with the man of my dreams. In June of 2016, we got married and will be traveling all over the United States with him to wherever the Coast Guard sends him. Also in June, I was matched with my guide dog, Fred, who helps me live a more independent and active life.
I started making YouTube videos in the summer of 2014, not only to show friends and family the progress I was making in physical therapy, but to give the world an idea of what living with a rare autoimmune disease is like. At the time, I had no idea that would become my way of raising awareness and connecting with other people with NMO too. Thank you for reading my NMO story. I’m hopeful that by sharing patient stories via The Sumaira Foundation for NMO, this community of patients and caregivers will finally get the attention that we need and deserve.
Published on November 4, 2016