By Erica Flowers
My name is Erica. On the morning of Thursday, July 12, 2018, I had just gotten home from a 6am basketball practice feeling as good as can be. The night before, I played two hours of club lacrosse, preparing for a major tournament that next weekend.
By 9am, I had quickly showered and changed for the day, but something felt off. My leg felt tired and lagged a bit, but I brushed it off as just being tired from both sports practices.
At 10am, I went to my camp counselor training course. Although I was just sitting in a chair for the meeting, as time went on, I started feeling worse. My side and leg were tingling, shaking a bit, and my side felt like it was on fire. I stayed in my seat and tried to focus. I stuck it out, denying the fact that something was really wrong.
By noon, the course was over, but I could not remember anything they had said. I knew I needed to get out of there and get home. I stood up from my chair, and my flip flop fell off. I kept trying to curl my toes around it – why wouldn’t it stay on? That was the moment I knew that something bad was happening. My two friends practically carried me out of the building to the car, but they had no idea why. How could I explain to them why, when I did not even understand myself? I didn’t say a word. We just made a joke of it, laughed at how silly it was… I just needed to get home.
Now I was home. I could not stand, and I could not explain why. I was hunched over crying in pain and fear. My mom and brother rushed me to a local hospital thinking my appendix ruptured. After an ultrasound, x-rays, and blood work, they said my appendix was fine, my ovaries were fine, I should be fine. At some point my mother started saying “we need to move her, something is wrong, my daughter says she feels pins and needles, she’s shaking, and you can’t figure out why.” Something was wrong, but they didn’t know what and were not equipped to figure it out. Finally convinced, they allowed me to move to Boston Children’s Hospital.
At 5pm, the ambulance finally arrived to bring me to Boston. What should have been a 30-minute ride turned into more than 2 hours…and I suppose we had the Red Sox game and Boston traffic to thank for that. My mom rode up front in the passenger seat. I don’t remember much about the ride, but there was a point where I started shaking uncontrollably. My mom recalls the driver turning to her and saying “don’t say anything and don’t panic, just casually turn around to look at your daughter. Has this been happening all day?” She said, “Oh no, this is new.”
By midnight, from a small room in the Emergency Department, they had completed an MRI, CAT scan, spinal tap, and more blood work. Apparently, the technician reviewing my MRI saw a spot on my spinal cord but thought nothing of it, but the neurologist on-call saw the same spot and thought that was the answer. Right then she knew. She came into our temporary room and told us it was a rare disorder called Transverse Myelitis. It was all gibberish to us; by then I was on medication and my mom was exhausted but trying desperately to understand. Finally, the neurologist drew a stick figure person with a spinal cord showing the lesions and what nerves they were affecting with arrows to those parts of the body. We still have that picture, taped inside of what is now my Mom’s ever-growing folder entitled: “Erica’s Medical Adventure.”
That was an understatement! I was immediately admitted, and the next morning the neuroimmunologist and posse of doctors tailing behind him came in to tell us the initial tests concurred this was Transverse Myelitis, but we would not know for days whether I had other infectious diseases or how I was immunocompromised. Regardless, we needed to start a course of treatment to stop the attack. My room was now in quarantine, I was hooked up to various machines, and I couldn’t move or feel from my chest down to my toes on my right side, yet the only thing I could think about was whether I would be home for my lacrosse tournament that weekend… That’s just how teenage tunnel vision works, I guess. The next eight days I would undergo IV steroid and IVIG treatments. These worked to stop the lesions from spreading, but it was too late. The trauma to my spinal cord had already been done; it would be there forever.
Forever? What about lacrosse? Summer vacation? School? Friends? Next year? Each time I asked if my sensation and movement would come back, they told me that they hoped so but couldn’t guarantee. There wasn’t enough historical evidence or research, everyone’s body reacted and recovered differently.
When I was finally cleared to leave the hospital, I didn’t go home but rather transferred to Spaulding Rehab Center. Here I spent two hours a day on physical and occupational therapy. I had to relearn how to sit up, stand up, lay down, walk on stairs, go to the bathroom, shower, and pretty much anything else you learned for the first time – I was like a toddler.
I’m a teenager. I’m an athlete. I wasn’t meant to be lying in bed or moving in a wheelchair. Those next few weeks I worked hard towards the use of a walker. I spent my free time at Spaulding hobbling about, doing one half of a lap at a time, rest, one half lap, rest. Then one lap, etc., up and down the hallway. By dinner time each night, I was back in the wheelchair, too tired to move. It went on like that day after day. When it was finally time to transfer home, I was starting to walk with forearm crutches….it wasn’t pretty, but it was better than the wheelchair.
The next few months at home were rough, re-learning movements, trying to do things without help, having equipment in the shower, going up and down stairs on my butt because my leg just would not move, feeling bloated from the steroids, trying to manage the pain and routine of all the medicines…it went on and on. My friends were out having summer fun, I was home crying, wondering how I was even going to get through from one hour to the next. That September, my mom noticed that I was getting worse. She immediately contacted the neurologist, worrying that I was having a flare up. Turns out, I was. I was not in the head space to have realized it myself, I was just living day to day. My lesions became active again from weaning off the oral steroids too fast. Back into the hospital I went, 3 more days of IV steroids and starting the regime of treatments all over again. I thank my mom for noticing something was wrong, but I just didn’t know how much more I could take.
Going to school was so hard, struggling down the hallways with this awkward metal crutch and a severe drop foot, backpack loaded for the day. The stares I got and the pity I felt was unbearable. If someone dared to ask how I was, I just put on a smile and said, “I’m good.” Did they really want me to tell the truth? To hear what my day was really like? The days turned to weeks, but time seemed to pass so slowly. I’d have a good day, then a bad day. Each time I’d tell myself, “I just need to get through the day.”
In December, there was hope. By chance, a family friend saw a Chronicle episode on TV of a woman who had TM. In her case, it had gone undiagnosed for years earlier in her childhood. After years of struggles, searches, and breakthroughs, her family saw a need and opened Project Walk Boston, a spinal cord injury rehab center specifically focused for patients with TM, MS, TBI, AFM, etc. Why had no one told us about this place? Given us this option? I guess it doesn’t really matter how we found them, just that we did, and they have now become a big part of my recovery and my life.
Week after week I make the drive to Project Walk, working on many different ways to stimulate my body and determine what works best for me. Sometimes it is electrical stimulation to wake muscles that have not moved, sometimes I strap into a harness to keep me upright so I can “walk.” The goal is to teach my body to compensate by using other muscles and body parts, to retrain my brain to move and walk. Slowly it is working…and then some days nothing works at all. I guess this is my new normal.
The neurologist said they caught it quick…apparently 24 hours is quick in terms of diagnosing a rare disease. I often think about how I would be doing now if I did not have a quick diagnosis. If I had not had the sharp pain in my side, would I have just brushed it off as tired legs or sore muscles from sports and let it go for days longer before seeing a doctor? For others with complications similar to mine, how long did it take for them to get diagnosed? Was it days, months, years?
These questions and lingering thoughts are what brought me to choose the topic for my high school senior capstone project: The Misdiagnosis and Late Diagnosis of Transverse Myelitis. I want to learn if my story of diagnosis and my timeline is similar to or different from others.
In my research to date, I have found there were multiple common diagnostic errors, a lack of rare disease education in medical school, and the need for a universal approach to diagnosing Transverse Myelitis. I wonder how significantly these factors impact the outcome of a patient’s diagnosis, outcome, and quality of life.
One final part of my research involves anyone who has been a patient diagnosed with this disease or who is a family member or caregiver of a person with TM. I have created a questionnaire that will give me insight to what the patient’s side of the diagnostic process looked like. It is completely anonymous, and I would greatly appreciate your participation. My project may not immediately put an end to the misdiagnosis and late diagnosis of Transverse Myelitis, but my hope is to satisfy my curiosity, share my findings with others, and possibly revisit this topic as I head off to college and later in life in my career in the medical field.
You can complete the questionnaire here.