A strong young woman who has learned to live with blindness and many years in a wheelchair, Marie, now 26, has been living with NMO since the age of 14.
Like for so many young people who are struck in their teens, Marie’s first attacks were of optic neuritis. She woke up one morning and found gray cloudiness in her right eye. Later that day, when she closed her left eye, she realized she couldn’t see at all. She had a headache on her right side.
Marie’s parents drove her to the emergency room, where the doctor attributed everything to adolescent exaggeration. When she could walk in a straight line, as instructed by the doctor, he sent her home. By this time, Marie’s head was pounding.
Marie’s mother took her to the eye doctor who diagnosed inflamed optic nerves. He sent her to an ophthalmologist, and he sent her to the emergency room for intravenous steroids (Solumedrol). The doctor there scheduled her with a neurologist. After a spinal tap, though, the doctor cancelled the appointment, saying he didn’t think her issue was neurological. He sent her to her primary care doctor, still with vision loss and a painful headache.
Two weeks later, Marie lost sight in her left eye. The ophthalmologist gave her oral steroids and said that was all he could do. “Go back to your primary care doctor,” he said.
A week after that, Marie got a surprise call from the University of New Mexico neurology department. She didn’t know they had been called. They asked her to come in and ended up giving her ten days of plasmapheresis. During that period, at some point, Marie was tested for neuromyelitis optica spectrum disorder (NMOSD), and the results came back negative. The results were negative, but Marie couldn’t see.
Seven months later, in 2007, Marie was retested for NMOSD, and this time, the results came back positive for the aquaporin-4 antibody (AQP4). Marie’s mother cried, and her father was scared. Marie wasn’t too worried, though – having never heard of NMOSD before, she figured it was better than another potential diagnosis. She held hope that her vision might one day return.
The doctors started Marie on Imuran, but she threw up an hour after taking every pill. She tried Rituximab, but she had trouble breathing and broke out in spots during the infusion. They switched her to CellCept, which she took from 2008 – 2015.
Marie was blind, but smart. Her IQ, she was told, was too high for her to qualify for special education – so she had to fight for the right to get an education. Due to medical appointments and fatigue, Marie missed half of eighth grade, but she was thrown into ninth grade in any case. She was offered “compensating education”, and was supposedly provided with a tutor, who did not show up. Because she was “owed” this education by the school system, they graduated her anyway. She even started and almost completed a college program, but the stress caused too many medical complications.
In October 2009, Marie had her first transverse myelitis attack; in 2011, her second; and in 2013, her third. She was hospitalized each time, and each time, she regained her ability to walk.
One morning in December 2013, though, Marie couldn’t get out of bed. Her legs were hot and red. At the hospital, she was diagnosed with cellulitis. They sent her home. The next day, the same thing happened. Marie had to use a wheelchair. She was sent to a skilled nursing facility. On Christmas Eve, Marie couldn’t breathe and felt that her heart hurt. On Christmas day, she was given Solumedrol and plasmapheresis, from which she developed a C diff infection. In the new year, she also got a blood clot, a pulmonary embolism, an ulcer and pneumonia. This young woman was coping with an onslaught of medical issues.
By this point, Marie was back and forth to and from the hospital. She was getting plasmapheresis monthly and was still on CellCept. By the end of September 2014, Marie had a brain stem attack. She can’t remember anything from that time, but her parents report that she was dizzy, she couldn’t get words out, her legs were jumping, and she was acting crazy. Then she slept for a week. After that period, she had to learn to talk and eat again.
Obviously, her medications were failing. She tried Rituximab again and tolerated the treatment. Still, the doctors near her home outside of Albuquerque were unfamiliar with NMOSD, and Marie was a relapsing patient who was blind and paralyzed. Nobody local would take her on. Instead, they sent her to Denver, Colorado, where she received another Rituximab infusion. A few weeks later, she relapsed.
Marie was prescribed Tocilizumab but was denied by the insurance company. Her doctors appealed, and she was finally approved in April 2015.
Since that time, Marie has had monthly hour-long infusions, and she has been relapse-free.
She is up against new insurance snafus and has had to learn to advocate for herself and to fight for her right to health care that works to calm her raging immune system. She does all this while blind and in a wheelchair.
Four years after becoming paralyzed, Marie is just now beginning to walk a bit with a leg brace and a walker. She credits these few years without a relapse to regular physical therapy and deep faith in bringing her back to her feet.
Marie is in touch with many NMOSD patients by phone, internet and through support groups on a regular basis. She is a cheerleader for many and leads by example. Her disabilities do not get in her way, and they do not bring her down.
Blind and mostly in a wheelchair, this young woman lives as normal a life as possible. She richly remembers colors from when she could see. She is a girl’s girl, who loves to polish her nails and curl her hair. She enjoys her friends and family. She even enjoys television and movies, where she hears what is happening, and she loves the outdoors. She does a lot of chores at home, where she lives with her loving parents, and she is a great baker. She specializes in something she calls Indian Bread. Make sure to ask her for some when you visit! Because Marie, being Marie, would surely want you to.
As told to Gabriela Romanow on 11/13/18. This story originally appeared on The Sumaira Foundation for NMO’s website and can be viewed here.