Liz’s NMO Story – In Orbit, Flying High

 

Liz has had NMO for 25 years now.  She’s only known it for ten…

Since she’d had migraines throughout her childhood, Liz and her mother didn’t think too much of it when, at age 11, the “migraine” around her left eye was so bad that she thought she needed glasses.  But obligingly, her mother covered her other eye and tested her daughter’s vision. Liz saw nothing.

They headed to the emergency room, where the doctor first sent her for a psychological evaluation.  Liz’s parents were in the middle of a divorce. Stress, they thought. A friend of her parents suggested Liz might be seeking attention, but her parents knew their daughter wouldn’t do that.  Plus, she couldn’t see out of her left eye.

In the hospital, Liz was given an MRI which clearly showed a lesion in her optic nerve.  A team of neurologists and ophthalmologists was baffled. She was far too young for Multiple Sclerosis (MS), and she had no other symptoms of that disease.  They had no other answers. The mystery kept Liz going to specialists from all over the country every Thursday for a year. The doctors did not treat her; they just tested.  They were reluctant to give steroids to a girl so young.

Over six months, her ability to see gradually returned.  And then, just as suddenly as the first time, her right eye went blind.  They tried diets and natural remedies. And then, Liz was tired, so tired. And sick to her stomach all the time.  She kept having migraines strong enough to make her vomit. She had to leave school. Liz was home-schooled for half of fifth and all of sixth grade.  She was a great student, and had no problem keeping up with the work. She continued studying ballet, and fell hard in love with riding horses.

Again over time, Liz regained her vision and energy.  Still, she noticed that when she was overheated – from dancing, riding, or even a shower, the symptoms roared back.  If she sat and cooled down for twenty minutes, her vision would return.

By seventh grade, Liz felt well enough to attend school.   She remained healthy until her senior year of high school. That year, in October, she was given the DTAP and 1st HepB vaccinations, and fell into a full-blown seizure.  Only after that, did they read the small print on the packaging warning those who have had neurological problems to not get these vaccines.  This reaction reminded Liz that what she had suffered in her youth was not just a thing of the past.

She attended Baylor University, and enjoyed a typical freshman year.  But Liz felt terrible during her first summer back home in 2001. She was always tired, had terrible headaches, and was constantly sick to her stomach.  No medications helped. After about a month, she became blind in her left eye. She was diagnosed again with MS, and given Avonex (an MS interferon drug) and Solumedrol (IV steroids).  Most of her symptoms began to clear.

Still, Liz entered her sophomore year half blind.  She tried to live as normally as possible, but struggled with her illness and her studies.  She finally was granted accommodations so that she was excused for excessive absences, had extra time for tests, and had readers for her exams.  

The Avonex wasn’t working, but Liz started monthly Solumedrol infusions, which were; she stopped taking Avonex.

In her junior year, Liz was excelling in school, and dancing and teaching ballet until suddenly, her neck stiffened.  She was nauseous. The stiffness extended down her back. She felt like she was in a vice grip. Her legs and feet started itching terribly.  Itching, burning and tingling. She couldn’t wear jeans or anything with seams. She could hardly sit, much less dance. She was absolutely miserable.  Twice she went to the emergency room and twice, they thought she had a pinched nerve. It didn’t seem like MS to the doctors there. They did an MRI on her thoracic and lumbar spine, and found nothing.  They neglected to take images of her cervical spine, where, of course, her lesion was. She tried hot and cold pads, chiropractors and muscle relaxants.

Again, Liz partly recovered, probably due to her monthly infusions.  Her vision was no longer perfect, her body wasn’t quite right, and she had significant bladder retention, resulting in multiple urinary tract infections. But she persevered. During college, Liz was constantly facing her condition – each relapse created a new baseline, a new normal.  She was driven, and trained her brain to see, her body to move. She was strong. She was stubborn. And she was 19.

Liz got engaged her senior year, and they married the next summer.  She went to law school; he went to pharmacy school. Her doctor changed her prescription from monthly steroid infusions to oral steroids.  She didn’t relapse all through law school, though she still periodically suffered from migraines, vomiting, and the ongoing residual issues with her eyes, legs and feet.

Then living in New Jersey, Liz studied for the New York bar exam, which she had to take in Albany.  Soon after, she started losing vision in her right eye (the left was already partially blind). Her husband was away, so Liz took a cab to the emergency room.  She asked for Solumedrol and to be released, as she “knew the ropes.” The doctors insisted she be admitted to the hospital, where they did a battery of tests. Everything was clear but her optic nerves.  They wanted to put her back on MS drugs, but Liz refused. She wanted a second opinion. Within twenty minutes, this new neurologist diagnosed Neuromyelitis Optica (NMO). Though he had never actually seen a patient with NMO, he was pretty sure this was what Liz had.  He sent her blood for testing at the Mayo, and though it came back negative, he remained convinced. He sent her to his mentor, who affirmed the diagnosis of NMO. It was 2007.

Liz googled the disease (“big mistake!” she says), but everything made complete sense.  All of her symptoms fit into that diagnosis. Over the next couple of years, Liz tinkered with various treatments until she and her doctor found that a combination of monthly IVIG and Solumedrol worked the best for her.  During that period of experimentation, in September of 2008, Liz had her second transverse myelitis attack. This time, she got an immediate MRI of her cervical spine, where the lesion was discovered, confirming the NMO diagnosis.  

In November, Liz was celebrating her birthday hooked up to IVIG, when she found out she had failed the bar exam.  “What a way to start my 25th year!” she thought.  

She and her husband decided they wanted to have children, and that, given her diagnosis, it could be now or never.  She was the first diagnosed patient with NMO who wanted to get pregnant, as far as Liz knew. IVIG and steroids were acceptable during a pregnancy.  But for whatever reason, Liz needed fertility drugs to get pregnant. The drugs worked, but she miscarried again and again. Finally, three and a half years later, she stayed pregnant with twins.  They moved back to Texas to be near family. And lucky for them, near Dr. Benjamin Greenberg, who followed Liz closely throughout her pregnancy and early motherhood. Despite being born two months early, and spending their first month in the NICU, Liz’s twin boys were healthy.  She felt fine post partem, and loved being a mother.

But a few years later, in 2014, her marriage was breaking up. The boys were about to start preschool.  Dr. Greenberg proposed that Liz try Rituximab. It made her sick. She reverted to Solumedrol and IVIG.

In 2016, doctors confirmed that Liz had other immune diseases in addition to NMO, and though not precisely diagnosed, she was put on Methotrexate.  Her endocrine system collapsed. She couldn’t metabolize the drug, or much of anything else. Her weight dropped to 87 pounds. She had a pseudo flare in her right eye. She spent a week in the hospital.  Her health was compromised, and Liz had to quit her job.

As in the past, she gradually recovered, and then Liz met an amazing man.  They married, bought a house, and Liz started another happier family life. She still suffered from NMO (and other autoimmune disease) residuals, but she was determined to work.  Through neighborhood outreach, Liz and an accomplished criminal lawyer found each other. The lawyer explained that she had been recently diagnosed with lupus, and thus needed an assistant. Liz explained that long ago, she had been diagnosed with NMO, and therefore hadn’t worked in law, though she had the degree. Like her second marriage, this was a match made in heaven.

Liz feels lucky to have been diagnosed when others with NMO had created google (and now Facebook) pages to find each other, and just about when the Guthy-Jackson Foundation was created.  She felt extremely well supported by people who had similar ordeals, and took great advantage of their teaching and advice. She then paid it right back to others, as a woman who had endured NMO both as a child and as an adult, and as a woman who, despite her illness, followed through with a pregnancy.

When Liz had no diagnosis, she felt her life was in free fall.  And when, fifteen years later, she received a definitive diagnosis, she felt that she was finally in orbit.  She is thankful for the people who have come into her life due to NMO, and is equally thankful to those who have stayed in her life despite NMO.  

As a woman who has had serious medical issues for most of her life, Liz has learned to keep on keeping on.  She has learned to value her own experience, and fought a lot of medical experts over many years when she was clear about what worked and what didn’t work for her, notwithstanding their education and degrees.  She was a child who continued to dance and ride horses when her body begged her to stop. She was a teenager who was different inside, though she looked the same as everyone else outside. She was a woman who insisted upon her right to have children despite the fears that could have stopped her.  

Liz is a woman who has stayed in orbit, flying high.

Fort Worth, Texas

As told to Gabriela Romanow 1/5/18