My name is Julie Cooke. I am 62 years old and live in Magalia, (Northern) California. At the beginning of 2018, I noticed that I was having some mild eye pain upon movement and to the touch. I also developed debilitating headaches. I attributed it to long hours on my computer, working as an office administrator and bookkeeper.
In late February, the eye pain became unbearable and I decided to go to my primary care physician to get checked out. I saw him the next day and he ordered an MRI for later that afternoon. My PCP suspected an issue with my retina. I also made an appointment with my local eye doctor, Anthony Rudick O.D, for the following day.
That night I went to bed in severe pain and woke during the night with no vision in my left eye and diminished vision in my right.
I was scared but I knew I was in good hands with Dr. Rudick. I called and he had me come in immediately. When he tested my optic nerves, the swelling was off the charts in both eyes. He was extremely concerned my vision would not be restored without going immediately to the emergency room at University of California Davis Medical Center, an outstanding teaching facility in Sacramento, about two hours away from home. He knew I had bilateral optic neuritis and wanted me to benefit from having a neuro-opthalmologist, and a neurology team, monitoring my case at UCD. Dr. Rudick gave me and my husband his cell number and said to text him with updates.
When we arrived in the ER, I went to triage and could not see the big “E” on the eye chart with my left eye and the vision in my right eye continued to worsen. Once I was in a room, a battery of tests were run, including a lumbar puncture, many visual acuity tests, multiple MRI’s, and blood work. I was admitted to the hospital that night and began a five day course of IV Solumedrol. My blood work was sent to the Mayo Clinic because they suspected MOG antibody disease. By the final day of Solumedrol, my vision was back to its normal baseline and the swelling had subsided. The blood work came back and, as predicted, I was MOG positive and, surprisingly to me, AQP4 negative. I was officially diagnosed with NMOSD.
After my release from the hospital, I was set up with a neurologist and a neuro-opthalmologist at UCD. I began taking Rituxan as my preventative within a few months after diagnosis. I had two relapses which manifested as numbness and tingling in my extremities. In both cases, the treatment was five days of outpatient IV-Solumedrol. After the second relapse, I consulted with my neurologist and decided to switch to Soliris. I have been taking it biweekly for just over a year now, with no relapses and minimal side effects (fatigue). I currently have physical therapy twice a week that helps tremendously with strengthening and balance.
I have had a lot of time for self-reflection since my March, 2018 diagnosis. 2018 was a painful year. My Mom passed away in May and our community was devastated by the Camp Fire on the Paradise Ridge in November.
I can now look past all the pain and move into the light.
I have been showered with tremendous blessings since the day I first walked into the emergency room, scared and confused. I have found a strong and caring support system in the MOG and NMO Facebook groups, I have developed trusted relationships with my stellar medical team. I have hope in knowing there’s research happening every day that will benefit all of us. So much more is known about MOG and NMOSD, even since my journey began. I live my life from a place of strength and determination, knowing I have so much to live for.
I am beyond grateful for Jay, my loving husband (and excellent caregiver) of almost forty-three years, our son Justin, daughter-in-law Samantha, granddaughter Hendrix (age three and a half), grandson August (age two), my extended family, spiritual community, and caring friends. Their love and support gives me tremendous hope and reminds me of my purpose in this life. On days when I am not feeling well, I allow myself time to acknowledge those feelings and then I can move forward into a positive space, feeling blessed that I am not defined by any diagnosis. I have a beautiful life that I cherish each and every day.
Warrior on, my friends! Hold on to hope and stay strong.
By Julie Cooke