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It was the summer of 2017, and 19-year-old Avery woke up unable to move her arm. Half of her body felt like it had caught on fire; the other half felt like it was dumped in an ice bath. Sharp, tingling pain started to spread across her legs and arms.
She got herself up, stumbled to the bathroom struggling to use her legs properly, and sat on the toilet. But something strange happened — Nothing came out. She couldn’t even pee.
She thought maybe she could rest it off. She napped for half an hour, woke up, and then couldn’t move her other arm either.
Her mom got her into the car and rushed her to the hospital. By the time she arrived in the E.R., she was almost paralyzed from the neck down. The vision in her left eye was gone and she could barely see out of the right. It felt like she was looking through a slice of Swiss cheese — there were only splotches of vision. She would later recall that the sensation was intense, like staring into the sun.
In her E.R. room, doctors swarmed around Avery, running test after test, but repeatedly reached dead ends. She was there for two weeks until she received an incorrect diagnosis: neuromyelitis optica, a sister autoimmune disease of the condition she would later discover she actually has: MOGAD (myelin oligodendrocyte glycoprotein antibody disease). “The doctors said that my body was attacking itself to the point where I was going to die if the attacks kept on, because it would shut down all of my important organs,” Avery recalled in the spring of 2022, reflecting on her hospital stay that was almost five years ago. She said she was immediately rushed into surgery to have her “port” put in — a bunch of tubes that connect to the main vein of the heart. These tubes hooked her up to a huge machine roughly the size of a small car, which filtered out the bad antibodies in her blood and provided her donor blood and plasma. She went through this process five times with the goal of reversing the paralysis, along with five days of receiving steroids through an I.V. She lived in the hospital for over a month.
“When I left the hospital, my vision had completely returned,” Avery said. “I only had small lesions on my left eye, which just makes it sore — I can’t look up, down, or to the side too hard. So I was thankful in that aspect.” About 80% of the paralysis reversed, but her journey was far from over — she still couldn’t go to the bathroom naturally. Back home, she returned to using a catheter.
Her journey with MOGAD began two weeks prior to her month long stay at the hospital in 2017. She left her Colorado home for a trip to California with her best friend and her sister in the summer following her freshman year at Augustana College in Illinois, where she had a full-ride scholarship to run on the track team.“It started first with just regular fatigue. Being a runner, I run miles and miles a day, so I noticed that walking just short distances was something that was really difficult for me now,” she recalled. The excuses began. “I’m just jet-lagged or tired. It was hot; the sun’s out,” she thought. Then a strong headache began that she struggled to describe — it felt like it was behind her eyeball. “It was making my eye so sore that just opening my eye and looking at things was too difficult for me,” she said.
Her best friend and her sister left California a day earlier than Avery. She went to Venice Beach alone, and as she looked out upon the water, she noticed the scene appeared blurry. Avery had brought along a book, and as she was reading, it felt the same way. The words were fuzzy, making it strenuous and difficult for her to read. Fear and concern began to rise. “I had felt like my life was about to change, so I had really enjoyed that last day on the beach,” she said.
Things got worse. On her plane ride home, the vision in her left eye slowly started to fade away. She picked up her book and realized she couldn’t read it anymore.
When Avery got back home to Colorado, her mom began taking her on a series of E.R. visits. Over and over, her concerns were dismissed. On the first trip she was told it was just a migraine and they sent her home with a typical migraine medication. The pain slightly subsided, but over the following days, it continued to erupt. She developed soreness in the right eye to the extent that it was more comfortable to just keep it closed. She went to the E.R. three different times for these symptoms to no avail. “Maybe it’s a migraine; maybe it’s anxiety or stress; maybe it’s depression,” doctors told her.
“MOGAD should never be dismissed,” said Dr. Michael Levy, the Research Director of the Division of Neuroimmunology & Neuroinfectious Disease at Massachusetts General Hospital. Levy specializes in rare neuroimmunological diseases, including MOGAD and neuromyelitis optica. “It’s frustrating when it happens, and it’s really a lack of awareness of the condition. They call it an invisible illness, because to the person outside of the patient, it’s really hard to see what’s wrong. So the patient will tell you, ‘I can’t see out of my right eye.’ But a lot of times the examination is normal, because the eye is fine. It’s the nerve behind the eye that’s abnormal and inflamed,” he said. “And I get it. I know patients are fed up.”
During Avery’s next visit, doctors saw something alarming: Her vision was almost completely gone in her left eye, and her right was starting to deteriorate as well. Tests were run, but the only thing they found out of the ordinary was Avery’s white blood cell count: it was through the roof. “They told me they’d checked me for every infection: ‘You don’t seem to have any viruses, so we’re just gonna send you home and have someone follow up,’” they said.
The follow up came, but help didn’t. Once again, doctor’s placed the blame on anxiety and depression. It had reached the point where seeking help was fading out of the picture. Her mom was concerned about Avery continuing to raise the bills when answers felt nowhere within reach.
After these two weeks of frustration, the morning arrived when Avery could not move her arms or use the bathroom. Only with such severe physical symptoms did it become clear to doctors that something serious was going on.
Avery returned home from the month of treatment in the hospital, and her doctors told her she needed to begin a chemotherapy process. “I was like, ‘chemo? What?'” she recalled. “So I’m looking up all the drugs, and basically, at the time, this was the only way to stop your immune system from attacking your whole body again.”
But two months into chemo, her doctors realized Avery was getting worse. She was hit with unfortunate news: this whole time, she’d been misdiagnosed. A blood test revealed she had myelin oligodendrocyte glycoprotein antibody disease, a very similar disease to neuromyelitis optica, but one requiring different treatment.
Unfortunately, misdiagnosis of MOGAD is not rare. According to Dr. Levy, MOGAD is frequently confused with both neuromyelitis optica and multiple sclerosis. “They all look a lot the same. They are similar in the sense that the immune system is attacking the nervous system, but they’re different in terms of which part of the nervous system is attacked. So the treatments are different,” he explained. “The treatments for neuromyelitis optica don’t work well for MOG — they work a little bit, but not well — and so they’ll continue to relapse.” Most of the referrals Dr. Levy receives from patients diagnosed with neuromyelitis optica end up actually having MOGAD. Living with a misdiagnosis can create complications: “There is some permanent damage from MOG. Certainly about 40 or 45% of people had some permanent damage as a result of attacks in the past. So we want to try to avoid misdiagnoses as much as we can,” he said.
So Avery began something new: intravenous immunoglobulin, or IVIG. She went in twice a month for treatment for a period of about 12-14 hours per day. But this process gave her a horrible side effect: chemical meningitis, or inflammation in the lining of the brain. She was stuck in the hospital after every treatment session. Avery only spent three or four days at home per month while on IVIG. “The chemical meningitis was trying to kill me, but it was the only thing keeping my immune system from killing me,” she said.
Avery was on this treatment for a year. “It got the the point where I had some brain issues from it— small little brain bleeds and what not. The doctors said my body can’t really handle this anymore,” she said. She was prescribed a pill version of the same medication: Then came more side effects. This time, she suffered awful gastrointestinal symptoms.
“I couldn’t eat. I was throwing up all the time. I never felt good,” she recalled. But Avery wanted to live. She had tried to return to school twice, but both times she was always sick and throwing up, and was forced to drop out.
Her childhood best friends began to grow distant. “I was so sick all the time. They wanted to just be young and in college and go to parties, and that’s just stuff that I couldn’t do anymore,” she said. She couldn’t participate in old hobbies, including mountain hiking and cliff diving, and the invites began to dwindle.
The last straw fell on a night where Avery decided to go to a party with her friends. Avery’s mom sat them down and explicitly explained Avery’s situation, letting them know that she may need to leave and go home or to the hospital. They promised to help Avery if needed.
The girls went to one of their houses an hour away from where Avery lived. They were getting ready when suddenly Avery began having a pseudo flare, in which the body replicates having an attack, but isn’t actually experiencing one. This can be provoked by stress. “I think I was so stressed being out there, trying to feel good and trying to fit in,” she said. She began losing her vision and panicking, so she told her friend, who promised to take her home if needed. “All the girls were just like, ‘oh yeah, that sucks,’ and were just continuing to get ready. I heard them talking about me in the bathroom saying, ‘She’s being really dramatic. She was fine a minute ago, and now she’s not,’” Avery recalled.
She resorted to calling her mother, who then reprimanded the girls for breaking their promise on speaker phone. Avery’s friend drove her home in silence.
Avery stayed in the hospital overnight, yet none of the friends checked in with her. “I got this long text message saying that everything that I’m going through is because I put myself in the situation. I was like, I paralyzed myself? Huh?” Avery recalled in disbelief.
“This group of girls I grew up with — they were family. We used to spend holidays together,” she said. “It sucks because I lost all my childhood friends, but I have gained some really amazing [new friends who] are sick. All the people with NMO and MOG are super close, because there’s not a lot of us young people that have it.”
Avery was eventually diagnosed with gastroparesis, or paralysis of the stomach. Doctors were going to insert a feeding tube, but she went to a G.I. specialist as a last resort. He ran tests to find the root of the problem: stomach issues, medication side effects, or a result of spinal cord injury.
The spinal cord injury caused by MOGAD created lasting gastrointestinal problems, making the gastroparesis become a new and separate issue from Avery’s MOGAD. “I am just now to the point where I have gotten medication to make it livable,” she said, meaning that she’s able to eat and keep her food down. Because the pill she was previously on made her miserable, she was finally taken off of it and put on something new called Myfortic. Her side effects are now less than they’ve ever been.
This past January, Avery had a stimulater inserted at the bottom of her spinal cord. It sends electrical stimulation to activate the nerves that otherwise don’t function, allowing her to go to the bathroom on her own. This has been extremely liberating for her, as she can now leave the house freely.
Avery lives her life constantly being monitored with blood tests and frequent MRIs. She fears her immune system will attack her body again despite her current medication. This would force her to turn to different treatment, which is a hefty challenge considering all MOGAD treatments are off-label, and Avery suffered severe side effects from the other forms of treatment she’s tried.
Avery’s MOGAD journey has been a particularly difficult one. While many MOG patients experience lasting paralysis and other side effects, Avery’s pursuit of treatment was uniquely challenging, according to Dr. Levy. Both the chemical meningitis that she received from IVIG and the gastrointestinal side effects from the pill form of the medication occur in less than 5% of cases. “I don’t want to scare people by suggesting that Avery’s course is the most likely, because it’s really unusual,” he said.
Avery is the most mobile she’s been since the onset of her illness. She’s gone through the journey of being confined to a wheelchair, walking with a cane, walking on her own, and now, this year, she’s just begun jogging. “It gives me hope that eventually my body will be able to run again,” she said.
“This really made me take a step back and realize what I thought was important in life was so minuscule in the grand scheme of things,” Avery said. “Right now, I’m the healthiest I’ve been since I’ve been sick. I couldn’t have asked for something better.”
