How neuromyelitis optica progressed for me
Joanna Robles, MD, started having unusual symptoms in the summer of 2020. She had bouts of nausea and vomiting that she couldn’t explain. Eventually, doctors diagnosed him with neuromyelitis optica (NMO), but the first few days were confusing.
“I would have random bouts of retching, vomiting, and hiccups,” says Robles, a 32-year-old pediatric hematologist oncologist from North Carolina. “I felt exhausted and just wanted an answer as to why I felt so bad.”
She first went to the emergency room, then to her GP, then to a gastroenterologist to try to find out what was triggering her symptoms. The visits all took place within weeks of each other because her nausea and vomiting had become so severe that she lost about 18 pounds in a very short time.
Just before Robles had an abdominal ultrasound and upper endoscopy, she developed a new symptom. She started having vision changes. So she saw a neurologist after the tests.
“The neurologist ordered an urgent brain MRI, which was initially read as normal. My vision loss progressed to the point that I was essentially blind in my left eye within just a few days,” Robles recalled.
She was able to get an urgent appointment with an optometrist, who then referred her to outpatient neuro-ophthalmology. Robles contacted the neurologist who had evaluated her a few days earlier. She was found to be suffering from optic neuritis, a condition in which the optic nerve in the eye becomes inflamed.
The neurologist sent her to the emergency room.
“The neuro-ophthalmologist who saw me in the ER immediately suspected that I had NMO due to the severity and rapidity with which my optic neuritis progressed and because of the nausea and vomiting I had experienced. before,” she said.
A blood test during his hospitalization confirmed his diagnosis.
How is NMO diagnosed and treated?
NMO, also known as Devic’s disease, is a rare condition that affects the eyes and spinal cord.
Most people who are diagnosed with NMO have either vision loss and eye pain – usually in one eye, but it can be both – or problems caused by inflammation of the spinal cord. This can include arm or leg weakness, numbness, and pain.
Uncontrollable nausea, vomiting, or hiccups like Robles’ are less common but very specific symptoms of this condition, says Aaron Miller, MD, medical director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis.
The primary way to diagnose the disease is through a blood test that looks for antibodies against a protein called aquaporin-4 (also called NMO-IgG). When the disease has been diagnosed, doctors treat any flare-ups and then try to prevent further flare-ups from occurring.
Robles was treated for her optic neuritis with IV steroids for 3 days in the hospital. Then she started taking oral steroids for a few weeks. Once her diagnosis was confirmed and she saw a neuroimmunologist, she started taking a drug called rituximab, which she now receives intravenously every 6 months.
Several new drugs are FDA approved for NMOs. But because they’re often not covered by insurance, many doctors start with older drugs.
Symptoms after treatment
Robles found that his vision returned to normal within weeks of starting steroids. Sometimes she still has problems.
“I notice very minimal vision differences between the affected left eye and the right eye, but these seem to get a bit worse if I’m really tired or hot,” she says.
She only has nausea once in a while, and it seems to kick in, she says, if she’s very tired. Robles is easily able to manage it with nausea medication but rarely needs to take it.
Probably his biggest symptom now is fatigue.
“It’s something my neurologist warned me about, but I didn’t fully understand how debilitating this feeling could be until I experienced it myself,” she says. “I eventually started taking medication to relieve my fatigue, which improved my symptoms dramatically.”
What is the outlook for people with NMO?
People with NMO can control their symptoms and live for many years. But getting treated as quickly as possible is very important, Miller says.
“It’s an unpredictable disease, and it can be a very serious disease because it’s a disease where people are neurologically impaired because of these flare-ups,” says Miller. “So if you have a bad push and you don’t recover well, you can end up with a significant neurological disability.”
People who do not control their symptoms and flare-ups can end up with blindness, paralysis of arms or legs, depression, and loss of bowel or bladder control.
Miller says he has had a number of patients in his practice who have had NMO for several years and they are doing very well with few or, in some cases, no symptoms.
Robles says his neurologist has been very encouraging about what to expect.
“I’ve been told that most patients don’t progress between relapses and the most important thing to prevent relapses is to be preventive,” she says. “I was warned of pseudo-flare-ups where symptoms of my old lesions could flare up, but I was warned that these were not to persist and I was instructed to call immediately for new symptoms lasting longer. 24 hours.”
Along with medical treatments, Robles says her faith, husband, family and friends have been key in helping her live with her illness.
“I also really wanted to meet other people with the disease and understand what their life was like. I read the information about NMO but I didn’t know how it was going to change my life, so I joined a virtual group through the Sumaira Foundation, which has helped me cope over the past year,” she says.
“I’m slowly starting to exercise regularly again, which I had stopped doing when I started to feel sick.”
