Diagnosis: Neuromyelitis Optica Spectrum Disorder
Oklahoma, United States
Before NMOSD, I was an active widow with three acres to care for, I worked full-time, was involved in church, was going to college and had six grandchildren whose activities I tried to attend. In 2010 I was struck with severe back pain. I spent three nights trying to sleep in a hot shower as that seemed to be the only relief I received. After three nights in pain, I went to see the doctor. She prescribed steroids and a pain shot, which caused some decrease in pain. The next morning, I could not lift my left leg into the car, but I went to work. I work for doctors in the same clinic as my doctor, and the moment she saw me, she knew something was wrong. She immediately sent me to the hospital where they did a series of MRIs trying to determine what was wrong. By the time I got to the hospital, my legs were having such severe spasms that I could not control them. My friend had to lay across my legs for the tech to get an EKG.
After seeing multiple doctors, they ran 15 tests on my blood. I was admitted and put on IV steroids which quickly began to help. The neurologist came in and told me that he didn’t know what I had. It could be ADEM, MS, NMO, etc. He wanted me to go and see a doctor that specializes in MS. Well, I knew enough to know it wasn’t MS. I was in the hospital about eight days and was released with physical therapy. I still had weakness in my left leg and banding around my chest. My family and I had decided that I had NMO but would only have one attack. Resting on that thought, I went back to my busy schedule.
Well, 6 months later I had a severe attack. I thought I had just been doing too much and that was the reason for my weakness and back pain. After two days, I woke and couldn’t move either leg. My kids loaded me in the car and took me to the hospital where I was again placed on steroids. By the second day I was still not improving and my neurologist (who I used to work for) came in the room and advised us to go see Dr. Benjamin Greenberg in Dallas. They still did not have a name attached to my disease.
We loaded in the car and headed for Texas the next day to see Dr. Greenberg, who immediately put me in the hospital on steroids. I was unable to move both legs for two months. They finally decided that I had NMOSD. Plasmapheresis was started, and I got movement in my right big toe! We started physical therapy but apparently during one of the periods that I had leg spasms, I tore my right Achilles tendon and my right foot would turn completely around when I stood (this was something I would discover years later). I was not making any headway in therapy as my blood pressure would drop very low and I would get sick. After trying this for several days, they decided to do another series of plasmapheresis and by the third treatment I was moving both legs. They continued to do seven treatments, and I was walking with a walker to the door of my room and short trips down the hallway. I am now back at work with a cane but can see the marked reduction in my stamina every day.
I was put on an infusion of Rituxan to keep from having more attacks to my spinal cord. Every 6 months I have this infusion. This lowers my immune system, so I take vitamins that will boost my system. I have to take 5 medications daily besides the vitamins and probiotics. Before NMOSD, I wasn’t taking any medications.
I participate in all the research studies in hopes that they will find a cure for this debilitating disease, if not in my lifetime, for those in the future that are cursed by this disease. I feel that answer lies in stem cell research and anticipate great strides in this area. I want to be chosen to participate in these trials.
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