How my neuromyelitis optica developed

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Joanna Robles, MD, first experienced unusual symptoms in the summer of 2020. She had bouts of nausea and vomiting that she couldn’t explain. Eventually, doctors diagnosed her with neuromyelitis optica (NMO), but the first few days were confusing.

“I had random episodes of gagging, vomiting, and hiccups,” says Robles, a 32-year-old pediatric hematologist and oncologist from North Carolina. “I felt exhausted and just wanted an answer as to why I was feeling so awful.”

First she went to the emergency room, then to her GP, then to a gastroenterologist to find out what was triggering her symptoms. The visits all happened within a few weeks because her nausea and vomiting had gotten so bad that she had 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 out with vision problems. So after the tests, she went to see a neurologist.

“The neurologist ordered an urgent brain MRI, which initially read as normal. My vision loss progressed to the point where I was essentially blind in my left eye within a few days,” Robles recalled.

She got an urgent appointment with an ophthalmologist, who then referred her to outpatient neuro-ophthalmology. Robles contacted the neurologist who had examined her a few days earlier. She was found to have 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 I had NMO because my optic neuritis was progressing so severely and rapidly and because I had previously suffered from nausea and vomiting,” she says.

A blood test during her hospital stay confirmed her diagnosis.

How is NMO diagnosed and treated?

Also known as Devic’s disease, NMO is a rare condition that affects your eyes and spinal cord.

Most people diagnosed with NMO either have vision loss and eye pain—usually in one eye, but it can be both—or problems caused by inflammation of the spinal cord. These can include arm or leg weakness, numbness, and pain.

Uncontrollable nausea, vomiting, or hiccups like Robles’ are less common symptoms but very specific to this disease, says Aaron Miller, MD, medical director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis.

The primary way to diagnose the disease is with a blood test, which looks for antibodies to a protein called aquaporin-4 (also called NMO-IgG). Once the disease is diagnosed, doctors treat any flare-ups and then try to prevent further flare-ups.

Robles was hospitalized for three days on intravenous steroids for her optic neuritis. Then she started taking oral steroids for a couple of weeks. After her diagnosis was confirmed and she saw a neuroimmunologist, she began taking a drug called rituximab, which she now has intravenously every 6 months.

Several new drugs are FDA approved for NMO. However, because they are often not covered by health insurance, many doctors start with older drugs.

symptoms after treatment

Robles found that her vision mostly returned to normal a few weeks after starting steroids. Sometimes she still has problems.

“I’m noticing some very minimal visual differences between the affected left and right eye, but these seem to be a little worse when I’m really tired or hot,” she says.

She only gets nausea now and then, and it seems to be triggered, she says, when she’s very tired. Robles can easily manage it with anti-nausea medication, but rarely needs to take it.

Probably her biggest symptom now is fatigue.

“My neurologist warned me about this, but I didn’t realize how debilitating this feeling could be until I experienced it myself,” she says. “I ended up starting a medication for my fatigue, which significantly improved my symptoms.”

What is the outlook for people with NMO?

People with NMO can control their symptoms and live for many years. But it’s very important to get treatment as soon as possible, Miller says.

“It’s an unpredictable disease, and it can be a very serious disease because this is a disease where people get neurological disabilities because of these flare-ups,” Miller says. “So if you have a bad flare-up and you don’t recover well, you can end up with significant neurological disability.”

People who don’t control their symptoms and flare-ups can lead to blindness, arm or leg paralysis, 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 are doing very well with few or, in some cases, no symptoms.

Robles says her neurologist was very encouraging about what to expect.

“I’ve been told that most patients don’t make any progress between relapses and that the most important thing to prevent recurrence is preventative treatment,” she says. “I have been warned of pseudo-flare-ups where symptoms from my old lesions could flare up again, but I have been warned these should not persist and have been instructed to call immediately for new symptoms lasting more than 24 hours.”

In addition to medical treatments, Robles says her faith, her husband, and her family and friends have played key roles in helping her live with her illness.

“I was also keen to meet other people with the disease and understand what their lives were like. I read the information about NMO but I didn’t know how this would change my life so I joined a virtual group through the Sumaira Foundation that has helped me cope with it over the past year,” she says.

“I’m also slowly starting to exercise regularly again, which I had stopped when I started feeling sick.”

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How my neuromyelitis optica developed
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