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Leah’s NMO Story – Resilience Through Life’s Interruptions

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

Leah with Aaron Brilbeck, News 9 reporter, at People With Disabilities Day at the Oklahoma State Capitol

Before I begin, I would like to thank you and tell you how much I appreciate you taking the time to read about my journey with neuromyelitis optica.

Prior to embarking on this journey, I was a normal, healthy, active child. I enjoyed reading, swimming, skating, skateboarding, bicycling, playing tennis, and riding horses. I enjoyed school and learning so much so that I never wanted to miss. One day during 5th – grade I came home crying because I had received a B – on a 6 weeks report card. That was nearly a C! I would play school and pretend I was teaching my stuffed animals. There wasn’t an injured or stray animal that I didn’t try to rescue and bring home.

My journey with NMO began on May 25, 1989, at 10 years old, when I woke up feeling sick and missed the last day of school of my fifth–grade year because of suspected food poisoning from going out to eat with family the night before. That day began three months of feeling like I had the flu, nausea, and vomiting. I would go to the doctor, be placed on 7 to 10 days of antibiotics, get a little bit better, and then once the antibiotics were finished go back to being sick. After three months of this cycle, I lost 20 pounds. I went from weighing 80 pounds at 5 feet tall to only weighing 60 pounds.

One Thursday, my pediatrician checked my CPK level, which shows muscle deterioration, and it was in the 3000s. He was sure the lab had made a mistake since that was the level of someone having a heart attack. So, the following Tuesday, we reran the lab work and the CPK level at that time was in the 6000s, which was the level of someone with muscular dystrophy. The doctor pulled my parents into the hall to tell them that if they didn’t find out what was wrong with me it was going to kill me. Doctors should remember that those walls are extremely thin. Thus began the first stage, the testing for possible diseases that I might have.

In July, I had gone to my yearly optometrist’s appointment. I had started wearing glasses two years earlier and this appointment showed that my eyes had gotten better. The lenses I needed were now thin enough to fit into wire frames. I had to wait about two weeks for my new glasses to arrive. During this time, I was trying to read the newspaper and one day my dad noticed that I was holding it very close. He asked, “Why are you holding it so close?” I thought, “So I can read it, DUH.” He then held it arm’s-length away and told me to read it. I was unable to read the 1-inch high headline “Talking with Betty White.” I then went to an ophthalmologist to determine if I could be fitted with any corrective lenses so that I would be able to see before starting the sixth-grade.

I couldn’t even see the big E on the eye chart. I was legally blind.

When I didn’t test positive for anything they suspected that I might have, they moved to the second stage, ruling out possible diseases. I went through an EMG and a muscle biopsy and still we didn’t know what I had. I would come home from a doctor’s appointment and look up the diseases they were ruling out in a physician’s desk reference. I remember thinking, “this disease wouldn’t kill me in 7 to 10 years and therefore wouldn’t be that bad to have.” When tests didn’t give any conclusive answers, the pediatrician told my parents that they should take me to a psychiatrist. Thankfully, they believed something was actually wrong with me and dismissed the doctor’s suggestion and kept pushing for answers.

On September 4, Labor Day, I went to a neuro-ophthalmologist and was diagnosed with optic neuritis at the age of 11 but we didn’t know the cause. He suspected Lyme disease since I had the antibodies but because I never tested positive always said don’t rule out multiple sclerosis. In spite of traveling over 2 hours to Oklahoma City every 2 weeks, I still ended up losing nearly all of the vision in my right eye. Over Thanksgiving weekend, I was trying to read my spelling words with my 10X magnifier and I was unable to do so because it was blurry. I just thought I was tired. I thought I would go to bed, get some sleep, and try again the next day. The following morning my mom came into my room.

I told her, “turn the lights on.” She told me, “They are on.” I said, “No, Mom. Turn them ALL on.” She said, “They are ALL on!” I had gone totally blind overnight.

My neuro-ophthalmologist now thought I should see the doctor that trained him.

In December, we boarded an airplane to travel to Miami, Florida to attend the Bascom Palmer Eye Institute, the #1 eye hospital in the nation. The doctor was still suspecting tickborne diseases so he was testing me for things like Rocky Mountain spotted tick fever and human ehrlichiosis. I received a steroid shot in my right eye orbit but no answers. I had been blind for about six weeks and then I started to think that I was beginning to get my vision back. At first it was just being able to see my bangs and the trim around a doorway but it was the beginning. It continued to improve over the next eight months to where I was legally blind, had no depth perception and learned that I was colorblind from playing Uno. The improvement was short lived and only lasted one month until I lost it again to where it basically is now, gray, a blind spot in the center, and a little bit of light perception in my left eye and nearly totally blind in my right eye.

Leah with Keith Siragusa, instructor, at Bennie’s Barn Therapeutic Horseback Riding

I learned Braille by correspondence from Hadley School for the Blind. I went to Parkview Oklahoma School for the Blind for a one-month program during the summer where I learned residential cane skills, decided that I wanted to remain in public school and that I definitely wanted to get a guide dog. I remained in public school where I was active in band, FFA, National Honor Society, and excelled in academics. During my 5 years in FFA, I served on the officer team, showed lambs, competed in public speaking contests, qualified for the National FFA Band for the allowed 2 years, and attended the Washington, D.C. leadership conference.

In February, 1992, I began experiencing an array of neurological symptoms. I was experiencing numbness, tingling, and on one occasion I nearly burned myself in the shower because I had lost the ability to feel hot and cold overnight and didn’t realize it. I was placed on oral prednisone, and began going from doctor to doctor, running test after test again, trying to figure out what was causing the symptoms. When a cerebral arteriogram didn’t give any answers, the pediatric rheumatologist said the next procedure they could do was a brain biopsy. The doctor wasn’t sure if the surgeons would be able to actually get a sample of one of the lesions that was visible on the MRI though. At that point, my mom said, “pack up her records and get us an appointment at Mayo Clinic.”

In October, at the age of 15, we flew to Rochester, Minnesota and checked into the hotel attached to the Mayo Clinic hospital for one week. Mayo Clinic didn’t simply accept the test results that had already been run. They had to do their own lab work, MRI, and lumbar puncture. I first stumped the pediatric neurologist and consequently was sent to an adult MS specialist. For years, doctors had asked if hot baths or showers bothered me and they didn’t. Finally, this neurologist asked if hot days bothered me. I had learned to adapt, if I wanted to take a hot shower, I showered with the vent on and the door open but when I couldn’t escape the heat, I felt awful. Next, by getting me to hyperventilate he caused a paroxysmal spasm. Paroxysmal spasms were only to occur in 4% of adult MS patients and the majority of them were painful. Mine weren’t painful however and I was a child. Lastly, the radiologist agreed that he had only seen MRIs of lesions in the brain like mine in patients with multiple sclerosis. Given this information, I was diagnosed with a mild childhood case of relapsing remitting multiple sclerosis. It was the happiest day of my life because I finally had a diagnosis.

During the following summer of 1994, I attended Lions World Services for the Blind in Little Rock, Arkansas where I lived off campus in order to learn daily living skills, downtown travel with a cane, and improve proficiency in reading and writing Braille. As soon as I had finished, I flew to Columbus, Ohio where I trained with and received my Pilot Dog Precious, a female yellow lab.

I returned to Little Rock the following year. This time, I was 16 and obtained employment at the North Little Rock KOA Kampgrounds where I lived while attending Lion’s World Services for the Blind. I wanted to ensure Precious and I had not developed any bad habits and we would be able to attend college the following year after graduation. I participated in a MS Walk in Lawton, Oklahoma where I raised the most money for the youth and started a MS support group in my hometown of Altus, Oklahoma.

I graduated salutatorian and the first blind student of Altus High School, started on Avonex, got married, moved to Memphis, Tennessee, had a death in the family, and began attending Rhodes College all within a 3-month period.

A few weeks later I had a migraine so severe I was forced to go to the ER. I received an injection of narcotics but the next day the migraine still hadn’t gone away so I returned to the ER and received another injection of narcotics. I made an appointment with a neurologist because when I would walk it didn’t feel as though the narcotics had ever worn off. He believed I was having a relapse and wanted to admit me to the hospital for IV steroids. I begged not to be admitted to the hospital because I never had been before then and I only had my husband who was legally blind and couldn’t drive. The doctor agreed and treated me with IV steroids through home healthcare.

During the next 8 months I endured several instances of domestic violence before finally calling the police. Even though I moved to campus after doing so, I wasn’t strong enough to stay away. My MRI was still showing changes even though I wasn’t having any symptoms. As a result, I was switched to the medication Copaxone. Given that I was still having relapses, my neurologist wanted me to see an Ear Nose and Throat specialist and see about having my tonsils removed.

On New Year’s Eve, 2001 I developed tonsillitis, which caused another relapse, hospitalized me, and caused me to miss the first days of classes. They finally MRIed my spinal cord. The doctor remarked that he was surprised that I could still walk given the amount of atrophy that had occurred in my spinal cord. I had never even walked with a limp. As a result of the latest relapse being caused by tonsillitis, the ENT moved up my tonsillectomy from when classes were over, to during spring break.

My neurologist had decided that I didn’t have a “mild” case of MS after all. Rather, it was aggressive and I should take a treatment that had just been approved for more aggressive forms of MS as soon as I graduated. I had yet another relapse at the end of spring semester and had to do my finals over the phone from a hospital room. My goal in physical therapy was to be able to walk across the stage and on May 12, 2001, I was the first blind student to graduate from Rhodes College in Memphis, Tennessee. I graduated with a Bachelor of Arts degree in mathematics, a minor in business, and one class away from a minor in physics.

On July 6, I received Novantrone and in a few days recovered from the initial side effects and 2 days after that I developed a sore throat. On Friday, July 13, I began to experience hypersensitivity on my right side. I phoned the neurologist and he said that it was to be expected since we had altered my immune system and there was nothing to worry about. My symptoms proceeded to progress rapidly throughout the weekend. My cervical spine was in excruciating pain. And I couldn’t get comfortable or sleep when I laid down no matter what position I was in. I was only able to walk by me moving my legs, and someone bear hugging me. I lost the use of my right arm and was unable to use it to eat and was forced to use my left arm. During the night, I noticed that I was unable to flip over in bed and could only roll.

When I woke up on Sunday, July 15, I was paralyzed from the chin down at the age of 22. The doctors first thought I had meningitis but that proved to be false. They didn’t know what I had but they knew that it wasn’t MS. They treated me with IV antibiotics and IV steroids but still there was no improvement. After talking to doctors at UT Southwestern Medical Center in Dallas, Texas, they said I had transverse myelitis and did 7 rounds of plasmapheresis. After 2 weeks and 6 days in the hospital, I was moved to inpatient rehabilitation at HealthSouth. While there, I began to regain movement of my arms and was finally relearning how to move my arms and scratch my nose. I also had lost the ability to feel and consequently could no longer read Braille or type. I could only feel pressure. Since I was in a wheelchair, I had to retire Precious. During her 8-year working career, we had flown to Kansas City, Missouri to be in the National FFA Band and twice to Washington, D. C. The first time was to accept an award on behalf of the Altus FFA Chapter from the Secretary of the Department of Education and the next time was to attend the Washington, D. C. FFA Leadership Conference. While in Memphis, Tennessee, we even had been kicked out of a court room by the bailiff and a movie theater by the police.

I came home from the rehab hospital to a hospital bed and TV set up in the dining room. I was a T3 incomplete paraplegic. The attack had also hit the left pons in the brainstem. I started on IVIG to try to prevent relapses but 11 months later I relapsed again. That meant another 7 rounds of plasmapheresis.

My husband believed that my neurologist and Mom were falsifying my medical records in order for me to stay in the hospital and get away from him. He heard me telling my caregiver that I wasn’t moving to Texas and in with his family and that I wanted a divorce. After I had become paralyzed, he was the one who became too depressed to do anything or even go to work.

I had figured out how to dial the telephone with my tongue.

This way, I could call family and former coworkers from college and let them know how I was doing when he left the house. Unbeknownst to me, he had begun taping my phone conversations. He ended up quitting his job and blaming it on me.

I didn’t know what to do so unfortunately, I followed him to San Antonio, Texas where we moved in with his parents. I got in with a neurologist in Round Rock, Texas who didn’t believe that I had MS and that I actually had something called neuromyelitis optica. I was angry at the idea of someone trying to take away my diagnosis, but I started on his treatment which was Rebif. Living with my husband’s parents only lasted 6 months before he made me call my mom and tell her we were moving in with her because he couldn’t stand living with his father who was on heroin and had won the Texas lottery.

On April 6, we moved in with my mom. 3 ½ weeks later I had a relapse. They had now started an MS center in Oklahoma City and I was transported there by ambulance. After 13 days in the hospital, I decided to go to inpatient rehabilitation despite my husband’s claim that he could teach me everything at home. On the first Friday I was in rehab, my mother came home from teaching school to find a letter that read, “All work and no play makes Joe a sad boy. I’ll call Leah from the road and tell her I’m leaving.” Unfortunately, it wasn’t for good. I ended up spending a total of 58 days in rehab. This time I learned to transfer my self with a sliding board with only minimum to moderate assistance and feed myself with specially built up silverware. Unfortunately, my husband thought me transferring myself took too long and I was making a mess and my food was getting cold if I attempted to feed myself. They say if you don’t use it you will lose it and I did which kept me dependent on him. I started on a different treatment, this time it was Imuran. My husband continued to leave me pretty much yearly and I continued relapsing.

In December 2004, the Mayo Clinic developed a blood test for neuromyelitis optica, formally Devic’s Disease and in May 2006, at the age of 27 I tested positive for the Aquaporin–4–IgG antibody and was diagnosed with neuromyelitis optica. In June 2006 I went to a fertility specialist alone, to see if there was a possibility that I would still be able to have children after receiving Novantrone despite my husband telling me that he no longer wanted to have children with me or adopt. In August I started on Rituxan, a chemotherapy by infusion, as a maintenance treatment to prevent relapses. I eventually learned that while I was in my 30s, my egg production was actually that of someone in their 40s. Later the same year, my husband left me for the last time on December 16. His last words to me were, “You’re damaged goods and no man will ever want you.” On January 15, 2008 I was finally divorced.

In 2016, my parents and I moved to Mustang, Oklahoma which is outside of Oklahoma City. In July 2018, I began occupational therapy twice a week and physical therapy once a week. On August 14, I learned in OT that I could lean over and touch my feet and sit back up in my wheelchair. In November, I increased my PT to twice a week. In December, I added both aquatic therapy and therapeutic horseback riding one day a week. On March 6, 2019 I began learning J–Say which uses JAWS for Windows and Dragon NaturallySpeaking professional to operate my computer hands-free and with only my voice.

I’ve been relapse free for 13 years and am finally seeing marked improvement after 17 years of paralysis and not on a year-to-year or even month to month basis but rather weekly!

Published on April 3, 2019

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