Heather’s NMO Story – Determined to Overcome

Something Wasn’t Right

I was the perfect example of the shiny student off to bigger and better things from the small country town where I grew up. I had a very bright future ahead of me. It was my last year of high school, and I was cramming in as many courses into my workload as possible while engaging in multiple extracurricular activities and working at a local pizza shop. Then suddenly, I started having vision problems. The school nurse assumed I was making it up as an excuse to get out of classes and my optometrist thought I was simply overworking my eyes. Boy, were they both wrong…

The summer after my freshman year of college, I stayed at home on my family’s dairy farm. Most days were spent outside in the blisteringly humid Pennsylvania weather helping with hay and other daily chores. On one particularly hot day, I was helping my family ready a field for hay raking, when I noticed tingling in my right arm. Not thinking anything of it, I went about my day as usual. I took a break and sipped on a cold drink. I didn’t feel right but I assumed I was dehydrated. As I sat there on an old log, it suddenly hit me – I could no longer feel my arm. It went from being tingly all over to being numb and weak. I wasn’t sure what was going on. All I knew was that something wasn’t right.

Yelling for my parents, I was terrified. In the short amount of time it took my parents to get to me and load me in the car, I had lost sensation from my right shoulder down to my toes on my right side. I couldn’t feel them, I couldn’t move them. I was horrified. In what seemed like mere minutes, we were at the hospital and I was being transferred into a hospital bed, clothes being cut from my body. Nurses and doctors were surrounding me and all I could wonder was, “am I dying?” Within moments, I was hooked up to monitors and was wheeled away for an emergency CAT scan. I heard some scary words like heart attack, stroke, and paralysis. What was going on with my body? I was fine just hours before.

The test results came back. It wasn’t my heart and it wasn’t a stroke, but we still had no idea what was going on. A neurologist who I had previously seen for my eyes was paged. The neurologist ordered a brain and orbit MRI and IV steroids to be given immediately. It is during this moment when I developed my love/hate relationship with steroids. I’m apparently allergic to them was plagued by horrible boil-like hives.

I received three days of IV steroids before I was able to get in for an MRI. By that time, no brain lesions were detected. Everyone assumed that the quick action and treatment had stopped the progression. However, I still couldn’t feel or use my right arm or right leg. The doctors were puzzled. I was admitted into the hospital where I received IV Solu-Medrol treatments for roughly 21 days. I saw many doctors, including one who is now my PCP.

My neurologist at the time ordered a slew of tests from lab work to MRIs of the brain. Everything came back clear and my condition remained stable. Each day, I had a team of doctors, nurses, and students round on my room. They took turns examining me, attempting to piece together the puzzle. About 10 days into my hospital stay, Dr. D (my current PCP) decided that he and the students were going to try something new – a dark eye mask covered my eyes so I couldn’t see. They removed the hospital gown and blankets and each student covered an area.

“Do you feel anything?”

“No, should I have? What did you do?”

 

They took turns sinking large gauge needles into my arm, wrist, hand, shoulder, hip, thigh, knee, calf, and feet. I remember hearing collective murmuring between the students and I was worried. I asked again, “What is going on? What did you do?” No one answered me. I started to panic. I felt my heart rate speeding up and it was getting harder to breathe. What weren’t they telling me? I reached up with my left hand and ripped the eye mask from my face. When I stared down at myself, I panicked. It’s no wonder why the students weren’t saying anything – I had large needles sticking out of my skin! There were many needle sites, including the tip of my toe. I’ll never forget the way Dr.D was looking at me. Usually he wore a smile; today he didn’t. He asked me, “Heather, do you not feel that? You didn’t flinch a muscle, not even when we put them in deep sensitive spots.” I remember having 48 needles removed from my body.

Dr. D returned a few hours later after speaking with my then-neurologist. It was relapsing-remitting Multiple Sclerosis. I couldn’t help but cry. I was heartbroken with the diagnosis but glad that it wasn’t cancer or something worse. I started my new medication, Avonex.  After 30 days in the hospital, the new medication, and high doses of steroids, I was starting to get some feeling back on my right side. It was tingly and painful, as if my right side had fallen asleep.On June 29, 2006, I was admitted to the hospital the day before my my 19th birthday (yes, I will NEVER forget the first and only TM attack I have suffered thus far) and discharged 34 days later still unable to talk on my own.

A New Life

I returned home to a new life. The fun, carefree 18 year old was gone. In her place, was a young woman who had felt like her world was a snow-globe, twisted, shaken, and turned completely upside down. I no longer had my own bedroom with my own privacy. I depended on my family for the smallest and most intimate things be it taking a bath or shaving my legs. I had to learn to do everything again. It was surreal. My family transformed our beautiful dining room into a safe haven for me. No more white walls and sheer curtains. The room was now teal blue with blackout curtains to keep out the sun (which bothered my eyes) and everything was centered around a hospital bed. To help me get around, I had a wheelchair, a walker, a cane, and yes, even a bedside potty chair.  My bed itself had the mattress with the air ripples in it to help prevent any bed sores. My life completely changed. The only thing that remained a constant was my cat who slept with me in bed and the bookshelf filled with all of my favorite books like Gone With the Wind. I also had a TV set up with connection to the satellite dish so I could watch my favorite shows.

Every day was a new struggle. I’d wake up, get out of bed, hop into my wheelchair, do my daily morning ritual and then my family would help transfer me into the car and I would be on my way to physical therapy. Let me tell you, I’m a fighter. If someone tells me I can’t do something or it’s too hard, I push back. I refuse to let anything keep me down, and I looked at this new disease diagnosis the same way. I may have had MS but it didn’t have me, so each day I’d get up and exercise what seemed like every inch of my body. I was determined and they used that determination to push me to my limits and beyond.

I was lucky. My mom was able to be home with me during my recovery. She would get me to and from therapy 5 days a week, 2 sessions a day. Living at home and traveling to therapy certainly took its toll on me, but thanks to my amazing therapist, Ernie, I went from unable to walk at all to walking slowly (with an assisting device) in just a months time. It was hard work but together, we made it happen. One of the most memorable days was when I was able to fold up my wheelchair and set it in the corner of my room.

Setback & A New Diagnosis

I had a goal in mind – I wanted to go back to college even if it meant using my walking devices. I moved back to campus in September 2005 and didn’t even need my wheelchair! Each week, I self-injected Avonex something I saw as a small price to pay for regaining my independence and finishing school. I was happily back in school but I was getting sicker, steadily declining. I was getting horrible muscle spasms in my legs. It hurt so bad and my legs would twist in ways you’d have thought they were going to break. My right side still felt weak and partially numb. I woke up and could barely see; I was terrified. I informed my neurologist who wanted to see me right away. It was cumbersome because my on-campus housing was 2 hours from home so my parents had to pick me up and bring me to my doctor. I got an emergency MRI where active lesions were detected on both optic nerves. It was Optic Neuritis which required 5 days of IV steroids. Though blurry, I regained my vision and went back to school.

The cycle repeated itself several times – I’d have episodes of Optic Neuritis, get blasted with IV steroids, and go back to baseline. I was relapsing while on Avonex and my MRI brain scans always came back normal. So why was this happening? My neurologist now suspected NMO and it was time to seek a second opinion. After learning I did not have MS, I finally got off the Avonex. Clearly, it wasn’t the right medication as I had been relapsing every 2-3 months.

We learned all we could about this “new” disease. Whatever we knew about it was bone chilling. Years later, I was finally put on Imuran for my Ulcerative Colitis and NMOSD. I’d been told it would kill two birds with one stone. It wasn’t enough as I had 2 more relapses even with the new drug and steroids which led us to trying Plasmapheresis. After the first exchange, I miraculously regained most of what I lost and I felt amazing but unfortunately the effects didn’t last very long and I’ve never been able to fully recovery vision in my left eye. It is still dark and all I can see are shadows.

However, there is a silver lining… using the ELISA (enzyme-linked immunosorbent assay), my NMO antibodies came back positive. It was confirmed and I was no longer in diagnosis limbo. My treatments changed and we have some direction. I’d still use PLEX as a rescue therapy, Imuran for the UC, and Rituxan for NMO. I’m happy to say that with this regimen, I have been flare-free for an entire year! I am hopeful that I remain stable and continue living my life as normally as possible. I am a 28 year old, strong, fighting woman and will never let NMO dictate my life. I will never stop fighting and I hope you don’t either!

Published on March 14, 2017