Diagnosis: Neuromyelitis Optica Spectrum Disorder
Texas, United States
In January 2006, I noticed a slight change in my vision in my right eye, as though I was looking through wax paper or lace. I made an appointment with an ophthalmologist, who sent me to a neuro-ophthalmologist. After visual, strength, color, and balance tests, and a large blood draw, he thought it was a swollen optic nerve, or possibly early Multiple Sclerosis. He gave me a prescription for prednisone, and three days later all the blurriness was gone. Okay, no big deal, problem solved!
Three years later, in January 2009, there was a slight change in my vision in the same eye again. Days later, the vision was gone. I went to a different neuro-ophthalmologist and went through testing again. Later that week, I went to an infusion clinic for my first steroid infusion. By the time the visit was over, it was so icy outside that the infusion clinic closed early. I was then directed to the closest ER to get the drug. After being poked in both arms, leaving the plastic bendable ports in and then sticking the back of my hand, I made it through the week with the help of a dear friend who is like a sister to me. After about five days the vision was returning. I had finished the IV steroids and was tapered off the pills. Maybe just a freaky swollen optic nerve again, maybe MS, they were not sure. The rest of me felt fine. I never had any pain. I figured everything was okay.
In January 2012, the previous eye issues were weighing heavily on my mind, so I decided to get on my bicycle to get healthier. In April, I started feeling weak in my legs. My balance was off, and I started having odd feelings on my skin like itching, heat, tingling and a feeling of something wet. I attributed it to just getting older. I had been riding my bike, so I just explained the leg issues away. I discussed some of my symptoms with my general doctor, but the two incidences were not put together.
The first Saturday in November of that year I had bad chest pain. Thinking this was the end, I went to the ER. They couldn’t find a thing, so I was sent home. Sunday afternoon I quickly started having very bad pain under my ribs on my right side. I start getting violently ill, and the pain got worse. I went back to the ER, where once again, nothing. They did a sonogram on my gallbladder and it checked out fine. The pain lessened, and I was sent home again. On Tuesday, I went to a cardiologist for a stress test which was fine. On Wednesday, I saw my general doctor who suggested a gastroenterologist the next day.
The next day I woke up and could barely move at all. I went back to the ER, and brain and spine MRIs were ordered. A lesion from my shoulder blades to my waist was found. They kept saying it was probably MS, but I didn’t have those pesky lesions in my brain yet. I was admitted to the hospital because I couldn’t walk, and stayed for three days. After being pumped full of steroids and other medications, I was able to walk (and it was not pretty at all) with the help of a PT and a walker. On the third day, when I was able to walk with no assistance, I was sent home with no diagnosis, and no therapy. I went home to an empty house, sat on the floor and cried. I was frustrated and depressed and knew I needed to call the only person I knew with MS, Yvonne, my adopted Mom. If it wasn’t for her, I might still be sitting there. She gave me some physical advice, but most importantly she gave me mental advice, to pull myself up by my bootstraps, and just go on. That was the only way I could continue to be independent, and that was now my only mission in life.
After being home for several days I got a call, the diagnosis was Neuromyelitis Optica. What the heck was that? The Mayo Clinic and UT Southwestern Medical Center knew what it was, and UT Southwestern Medical Center was right here in Dallas. I made an appointment, and the first doctor I met was Dr. Allen DeSena. I knew right away that he understood exactly what was going on with me. Then I met Dr. Graves, she helped me start understanding what was going on in my body. I learned as much information that day as I lost. A lot of really big words and a heavy crash course how my body worked or didn’t work, in relation to my nerves and spine. My mind was blown by this rare disease. After meeting with both doctors, I met Sam Hughes, a Clinical Research Coordinator. With the information I was armed with, I felt safe and secure, and had a sense of well-being that would carry me far in recovery. I just knew I would regain every function I was lacking at that visit, and that I wanted to contribute to the research to find a cure. Sam educated me on how I could contribute. We started with a large blood draw. It was to go to the repository at UTSW, and be available to doctors around the world to study!
Fast forward two years, most of my life is different in subtle ways. The absolute first thing each morning is just to see if my fingers and toes still move. It took about six months to be able to walk without having to think about where each foot was placed, with each step I took. My left side was still very weak and tingly, and the weakest area is my leg and foot. I do carry the most awesome, bedazzled cane you could ever imagine in my truck though, just in case. It took about a year to figure out how to sleep through the night. It didn’t take any time at all to learn that lack of sleep would wreak havoc on me the next day. My endurance has been cut by a third. I get the odd sensations daily. Sometimes my skin feels sunburned or it feels like something is running over my foot, or one leg feels like it’s on fire. These are daily occurrences, and I’ve learned to just deal with it. Fatigue is my biggest nemesis and it’s the most difficult thing for me to deal with.
As the time has gone by, I have learned to cope and deal with my issues. It has become my new normal. I continue to donate blood, and have also donated spinal fluid to the Repository at UTSW Medical Center to aid in research.
As luck would have it, a clinical trial became available. in October 2015. I started the screening process for the MEDI 551 clinical trial. I was ecstatic to find out I qualified. I received the infusion shortly after, and hoped that I got the actual drug and not a placebo. Everything seemed to go along fine for six months. I didn’t notice any changes in symptoms, and life seemed stable. It was coming up on my second infusion, and I knew this time I would actually get the open label drug. I was excited again! The MRIs, blood work, and infusion were scheduled. One week before the process was to begin, it happened. I woke up too early, looked at the alarm clock, and knew immediately something was wrong, again. If my vision was going again, surely my legs were going to be affected too. It took me a few minutes to test them, but when I did, I was taken aback. They were weaker than they had ever been. This was worse than the initial attack. I was at Dr. Greenberg’s office by 7:30 am for an evaluation which indicated I had had a relapse. My rescue therapy consisted of three rounds of steroid infusions, followed by five rounds of plasmapheresis. Slowly, there was some improvement. My awesome bedazzled cane helped with the wobbly legs, and I was getting a little stronger. My vision returned to normal. The open label trial drug infusion was postponed for those couple of weeks, but I was eventually able to receive it.
I feel strongly about being a part of this trial and the possibility of helping others and myself. I have repeatedly asked myself over the last few years, if this journey is maybe my purpose in life. If maybe, I was somehow supposed to find Dr. Greenberg and his devoted staff at UTSW Medical Center. If maybe, I can make a difference. This year I also secured a position with a company that performs clinical research trials. I have the unique opportunity to view clinical research trials from the patient and now doctors’ view. It has become fascinating to me how the FDA, doctors, and patients come together for the hopeful betterment of medicines. As a result of my job, I better understand the strict guidelines involved and feel even more comfortable with my choice to be a part of a journey that will benefit other NMO patients like me.
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