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NMO Story: This is only the start of my story

I was finishing my last two years of high school, cramming as many academic courses into my workload as I could, not to mention multiple extracurricular activities and working at a local pizza shop. I was the perfect example of the shiny student off to bigger and better things than the small country town where I grew up. That is, until I started having problems with my vision. The schools nurse thought I was making it up to get out of classes, and my optometrist at the time thought I was just overworking my eyes.

Boy were they wrong, on both counts. One year after I graduated high school I had just finished up my first year of college. Choosing to spend the summer at home on my families dairy farm I found most of my days spent outside in the blisteringly humid Pennsylvania weather helping with hay and other daily chores.

One particularly hot day I had spent hoping my family ready a field for hay raking, when I noticed tingling in my right arm. Not thinking anything of it, I went on with the daily chores and as the midday sun was shining overhead I decided to take a break and have a cool drink. I didn’t feel right, and at first thought I figured I was merely 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 it wasn’t right.

Yelling for my parents, I was terrified. What was wrong with me? In the short amount of time it took my parents to get to me, 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 terrified.

In what seemed like mere minutes, we were at the hospital and I was being transferred into a hospital bed, my clothes being cut from my body. I had nurses and doctors on both sides of me, and all I can remember asking is, “am I dying?” I remember a very kind nurse taking my left hand and squeezing it, telling me they were doing everything they could. Within moments I was hooked up to monitors telling the doctors about my heart and was being wheeled away for an emergency cat scan. I remember hearing some scary words, heart attack, stroke, paralysis. I didn’t know what was going on with my own body, I had been fine just hours before.

Test results came back, and it wasn’t my heart and it wasn’t a stroke, but we still had no idea what was going on. That is when they began piecing things together and paged a neurologist I had seen for my eyes, which they diagnosed later as being optic neuritis episodes. The neurologist ordered a brain and orbit MRI and IV steroids to be given Immediately. That is when I developed my love/hate relationship with steroids. I am allergic to them, and never knew it. Luckily I was just plagued by horrible boil like hives instead of throat constriction.

We got three days of steroids via the IV before I was able to get in for an MRI. By that time, we did not see any brain lesions,and assumed that the quick action and treatment had stopped the progression. However, I still couldn’t feel or use my arm or leg on the right side of my body. Doctors were puzzled. No stroke and no obvious Multiple sclerosis Flare. They admitted me into the hospital and started intravenous Solu-Medrol treatments which lasted roughly 21 days at one gram each. I saw many doctors, including one that is now my PCP. They were puzzled. 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 Doctor and stud not nurses round on my room. They took turn checking me over, trying to piece together the puzzle. It was like ai was their on personal mystery.

One day in particular, about ten days into my hospital stay, Dr. D (my pcp now) decided that he and the students were going to try something new. They got a dark eye mask and covered my eyes so I couldn’t see. They removed the hospital gown and blankets and each student took up a spot. Each time, it’s fresh needles, they would sink a large gauge needle into my arms, wrist,hands,shoulder, hip, thigh, knee, calf, and feet. They then asked if I felt anything. My response? No, should I have? What did you do? I remember hearing collective murmuring between the students and I was worried. I asked again, “What is going on? What did you do?” And again, nobody answered me. At that,point,mim 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 ai panicked. No wonder the students weren’t saying anything. I had needles, large needles, sticking out of my skin. There were more than thirty locations, including coming out from the tip of my toe, where needles were sticking out. And, where there are needles, there was blood.m

I remember Dr.D looking at me, usually he wore a smile, today he didn’t. I remember him asking 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 that. I remember them removing the needles from my body, fourth eight individual needles were removed. The sites were again cleaned with an alcohol prep, and then covered with a bandage.

Dr. D came back a few hours later and said that he spoke with my neurologist at the time and he had an answer for hat was wrong with me. I had MS. I remember sitting there crying. On on side I didn’t want ME, but I was glad it wasn’t cancer or worse. They decided that ai had relapsing-remitting MS and that I would need to start medication, of which we decided to go with Avonex..

After being in the hospital, for over thirty days and receiving high doses of steroids, I was starting to get some feeling back on my right side. It was tingly, and painful if you were to touch it. It literally felt like my right side had fallen asleep.

On June 29, 2006 I was admitted to the hospital for the reason above. It was the day before my my 19th birthday (yes, I will NEVER forget the first and only TM attack I suffered thus far). I was discharged from the hospital on August 3rd, 2006. I was hospitalized for 34 days, went through what seemed a million tests, had walls full of artwork and balloons from my little cousins, and still could not walk on my own.

I returned home to a new life. Gone was the fun and carefree girl of only 18 years old. In her place was a young woman who had felt like her world was a snow-globe, twisted and 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. My life was something you would see in a movie, I never thought it would happen to me.

Coming home, my family had turned our beautiful dining room into a safe haven for me. Gone were the white walls and sheer curtains. Now the room was teal blue with blackout curtains to keep out the sun (which bothered my eyes) and everything was centered around a hospital bed. Not only that but there was a slew of other items that I would need to make my life easier. I had a wheelchair that I used to get around the house, a walker, a cane, 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 that slept with me in bed and the bookshelf filled with all of my favorite books from GONE WITH THE WIND to A RING OF ENDLESS LIGHT. I also had a TV set up with connection to the satellite dish so I could watch tv.

Each day was a new struggle. I would wake up, get out of bed and 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 (morning session). Let me tell you this. 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 would get up, get dressed, and go to therapy, we would exercise what seemed every inch of my body from head to toe. I was determined, and they used that determination to push me to my limits and then just a bit further.

I was lucky. My mom was able to be home with me during my recovery. She would get me to and from therapy five days a week, two sessions a day. Living at home and traveling to get to therapy certainly took its tool, but thanks to an amazing therapist, Ernie, I went from not being able to walk to walking (with an assistive device) in a months time. Granted I was slow, it was hard work, but together we made it happen. I’ll never forget the day I was able to fold up my wheelchair and set it in the corner of my room (“for a rainy day”).

I had a goal in mind. I started off 2006 finishing up my second semester of college. Some September of 2006, I had every intention of going back to college, even if that meant using my assistive devices. And that is exactly what I did. I moved back onto campus September 05, 2005. And, I didn’t need my wheelchair! Each week I would have to give myself a shot of Avonex, but that was a small price to pay for my independence and being able to finish what I started. Or at least that is what I hoped.

Although I was able to go back to college, I found myself getting sicker and sicker. I did not have another flare like the one I did on June 29th, but steadily, I began to decline. I began to get horrible muscle spasms in my legs. They hurt so bad and my legs would twist in ways you’d have thought they were going to break. I was still weak on that side, but feeling did come back, though granted not all of it.
Then one day, I woke up and could barely see. I was terrified. At the time, I thought I had MS, and so my neurologist wanted to see me right away. Living two hours from home on campus, that meant my parents had to drive up to college, pick me up, and get me back to my doctor. He did an emergency MRI and saw active lesions on both my optic nerves. They called it optic neuritis, and I had it in both eyes. To play it safe, my neurologist put me in the hospital where they started pumping me full of steroids and Benadryl (since I’m allergic to steroids). Five days later and my vision was starting to come back, though a little bleary. So, I went back to school. This happened a few more times each time requiring steroids. I would get optic neuritis in one or both eyes. A year went by, and I was still using Avonex. My neurologist ordered new MRIs of my brain, as I kept getting ON again and again, and he was surprised that other than my optic nerves my brain scans were perfect. That made him start to wonder. Why was I getting sicker on the Avonex? He decided, once I had lost complete vision in my left eye, that I needed to see another doctor, he felt it wasn’t MS but that it was NMO. And so, here I was in Limbo again.

We learned all we could about this “new” disease. Nothing like starting from scratch, and this disease they thought I had was terrifying. Bone chilling terrifying! And so more doctors, more tests, even more tests. Eventually. After being to,d it was definitely NOT MS, I went off of the MS meds, because I had been relapsing every two or the months. And so the wait began. I was unprotected for years before I was placed on Imuran for my Ulcerative Colitis. Well, I was told it’d kill two birds with one stone. So, we were trying to prevent NMO relapses as they finally decided ai had NMO spectrum disorder. And yet, I had two more relapses that did not respond to steroids. My left eye had ON and then I had bilateral ON confirmed with MRIs and OCTs. We decided to do PLEX and amazingly the first time, I regained most of what I lost and felt amazing. The next time however, I did 14 days of IVSM plus PLEX and my vision in my left eye did it recover. It is still dark and all I can see are shadows. But there is a silver lining. Before they did PLeX the first time they reran the NMO IgG using the ELISA, and finally after all this time, it came back positive. I was no longer in diagnosis limbo, but was diagnosed full out with NMO. Soon thereafter my treatments changed. I would still use PLEX as a rescue therapy, but I no longer required Imuran (though I remain on it for ulcerative colitis). In May of 2015 I began being treated with Rituxan. It is coming up on one year since my last flare and I have not had any flares since then. It’s my hope that this therapy is doing its job as I have not flared and have remained neurologically stable. I know this isn’t the end of my story, and there are many chapters to come, but being a 28 year old young woman, I hope to live my life instead of letting NMO dictate mine. My story is only just beginning, and I cannot wait to see where it goes!

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