My Transverse Myelitis Journey

By Anonymous

It all started during 2014-2015 Christmas break in my 6th grade year.

On Christmas Eve, my family and I were exchanging gifts. This year, the power was out and it was pretty cold in our house, and my feet felt numb. My mom dismissed it as my feet being cold and told me to go put on another pair of socks. I followed what she said and continued with all the gifts and activities.

The next day, my feet and bottom felt numb. I didn’t think much of it, I thought it must’ve been the cold and how I slept. I also had flu-like symptoms, so my mom got some Tamiflu for me to take so I would hopefully get better.

The night of December 25th was sleepless. I had extreme pain in my lower back and hips. My mom gave me some pain medicine, which failed to work, and stayed with me through the night. The next morning, I woke up and could barely feel my legs. I attempted to get up but failed and ended up sitting on the floor.

11-year-old me didn’t sense the severity of this situation. I texted my mom “I’ve fallen and I can’t get up.” She thought I was joking, until she came and saw that I really couldn’t get up. I was helped to the couch. Then, my mom had to leave for work at the hospital, but her boyfriend at the time (her eventual husband and my legal father), Jim, was a general surgery resident. I didn’t know at the time, but he is the reason I’m nearly completely recovered today.

December 26th made everyone realize something was wrong. Jim asked me, “What do you mean when you say you can’t walk?” I told him, “When I try to walk, my legs don’t work.” Today, he tells me that at first he thought I was faking to get attention. So, he asked me to try to walk. He described my walk as a “slap-step,” which he knew I would not know how to fake, and my legs collapsed underneath me and I fell.

My mom called my aunt, a Registered Practical Nurse (RPN), to come and look at me to get a second opinion. She knew something was wrong also. During my aunt’s visit, I tried to use the restroom by myself, but when I got there and shut the door, my legs gave out and so did my bladder. The only strength I had was in my arms, so I dragged myself up and yelled for my aunt for clothes. This was only the first embarrassing memory.

That evening, we packed clothes and went to the children’s emergency room at the hospital Jim worked at. It was an hour drive and when we got there, I had to be carried inside because I couldn’t walk at all. We were in the waiting room for a long time.

When I finally got checked in, they asked me a number of questions I had already been asked by my mom, Jim, and my aunt. The first test they did was a bladder scan. My bladder was three times as full as it was supposed to be. I tried and tried to void but it wasn’t happening. I had to get a catheter. This was the worst thing I had ever experienced at that point in my life, and it was only the start.

Now, my hands and forearms were beginning to become numb also. Thanks to Jim, he made me get an MRI. This MRI lasted nearly three hours, and towards the end I was in a lot of pain, but I was unable to press the button because it was in my weakest hand. After that was finally done, the chief of pediatric neurology came to see me in the middle of the night.

Throughout this whole ordeal, I stayed completely calm, thinking, “I’ll be fine, Jim will get them to fix me, I’ll go back to school next week.” But my mom and Jim were a nervous wreck. Jim knew that if the chief of pediatric neurology comes in at an undesirable hour of the night, there’s a serious problem.

I don’t know how I was so lucky, but this neurologist had just completed a full study on transverse myelitis. He knew exactly what to do.

I had to get a spinal tap next, which would’ve hurt but I was becoming more and more paralyzed, so I didn’t feel much. I was in the ICU for the majority of the time after this. My doctor decided to treat me with a liter of steroids every 12 hours. This was painful. It made my IV vein stiff for the next few months.

My parents didn’t tell me for a while that the neurologist had originally told them I would never walk again. According to them, my mom was in complete shock and couldn’t comprehend anything the doctor was saying; she couldn’t make out what he was trying to tell her.

Through my whole hospital stay, a therapist was assigned to come talk to me. Every day. I hated him so much. All he was doing was trying to help, but I didn’t want to talk to anyone. Also, I couldn’t shower on my own. My mom had to help me, and it was awful. It feels terrible to not be able to take care of yourself. Every day I told myself, it will get worse before it gets better.

For three days, I made no improvement. Each day, I was urged, but I’ll call it forced, to sit up. It was extremely painful because I had a shingles-like pain all over what wasn’t paralyzed. I didn’t want to move at all, and the majority of the time, I didn’t. I had to have a CO2 monitor for a day or two and it made me look very sickly, and that made my mom even more stressed.

My doctor was planning for plasmapheresis the next day since I wasn’t getting any better. But on the fourth day, I could move my toe. By the end of that day, I could move my foot. The next day, I was able to use a walker to get mobile. It was an amazing improvement. That day, they also took my catheter out.

On day 5, my step brother brought my dog to the hospital. I was able to be wheeled outside, and I got to hold her. This made me extremely happy. My doctor told stories of the “dog church” that he went to. He had them all praying for me.

I was walking very well by the 6th day with the walker, but I hadn’t voided since they took my catheter out. So now, it was time for a new one. It was equally terrible as the first time. But hey, I could walk.

By the seventh day, I could walk on my own. It was time to go home. I was sent home with a walker, but I never had to use it. I was very disappointed that I was not going to get to go to school the next day. I didn’t want to be different from anyone at school.

When I was sent home, I had to use catheters to void since I couldn’t myself. This only lasted until I was able to get into a schedule.

I spent six weeks being home-bound and I did my best at keeping up with all my school work. I was extremely weak, and it really discouraged me since I was a cheerleader, and before everything happened, I was very strong and could do all kinds of flips. I went to physical therapy for two months and built some strength back, and during that time, I tried to do simple gymnastics. During my time at home, I was asked so many questions from my classmates. I hated being different.

When it was time to go back to school, I was very excited. But when I went back, there were even more questions. I also had a bladder schedule which I didn’t like since all I wanted was to be normal again. Around this time was when I started having accidents. My pelvic floor was extremely weak. These accidents are humiliating, and they still haven’t stopped today.

I continued with therapy and school as time went on. At my last visit with the neurologist on March 23, 2015, I was tested for neuromyelitis optica. The test was negative. On this doctor’s visit, I showed my neurologist how well I was by doing a back-walkover in the hallway. He was very proud.

Things continued about the same with my life for months. We went on a trip to San Antonio and during this trip my mom realized what a problem I had with my bladder. I had to pee every five minutes and had multiple accidents.

After returning home, I was referred to a pelvic floor therapist. I worked and worked with her for the school year and reached a point where I was pretty well off, so I tried to continue on my own through the summer. I wasn’t being held accountable by my therapist, so I slacked off. When it was time for the next school year, I had several accidents and started therapy again. Then, I quit the next summer. The next time I started back at therapy was right before the next school year. This worked well for me, though with the anxiety of school starting, I still had accidents. I have to pay very close attention to my body and not ignore anything it tells me. This way, I have less and less accidents.

Now, it’s my freshman year of high school, and I had been going to therapy until recently. I might not have to go ever again if I can keep up with everything on my own. I just recently had a surgery for my overactive bladder: a cystoscopy with Botox. I think this will work well for me, and I won’t have to take medication for it anymore. I just have to get it redone every 6-9 months.

I think my transverse myelitis was caused by a flu shot. I am choosing not to get a flu shot again because I worry about relapsing. Any numbness or odd sensation worries me that I might be having a relapse. I hope I will be lucky enough to not have a relapse, but nothing is guaranteed.

I am doing great now! I am on my school’s track team, I’m doing well in school, and I’m very hopeful that I will reach any goal I come across.

Think people should hear about this?