Diagnosis: Transverse Myelitis

New York, United States

My journey with transverse myelitis began like so many others’ journeys with this disease: all of a sudden I had neck pain that was radiating down my arms. I spent the day (December 19th, 2009) trying to stretch the pain away but it continued to get worse. I was at the mall with my grandmother buying boots for a trip I had planned. This was during my fourth and final year as an undergraduate student at New College of Florida. As the day progressed my neck pain got more severe. It became so severe that I decided it was time to find a walk-in clinic. I got out of bed and walked over to my computer to try finding a nearby clinic. I placed my right hand on my computer’s trackpad and realized I couldn’t move any of my fingers. I yelled to my grandmother “I can’t move my right hand!” I gathered my belongings and walked out of my grandmother’s condo and to the elevator. While waiting for the elevator I almost collapsed, and my legs continued to weaken as I walked from the elevator to the car. I dragged my legs into the car and we sped away to the Emergency Room.

At the hospital I got an MRI of my brain and spine almost immediately. The radiologists noticed an area of inflammation between C5 and C7. At this point I had lost all sensation and movement from the chest down and had no triceps or finger strength on either side. I was started on high dose IV steroids that night, and in the following days received plasmapheresis.

I spent around two weeks in acute care, and was then transferred to a rehabilitation hospital. I slowly gained some strength and sensation while at the rehab hospital, but also had some complications. I developed a mucous plug and needed to get a bronchoscopy to clear out my lungs. I required oxygen support and continued to have a persistent cough. I had to sit upright in bed because lying down caused me to cough uncontrollably, which then led to a pressure sore on my coccyx. I slowly recovered from both of these complications, but they were definitely a huge setback. I then returned to my rehabilitation program more determined than ever, with the support of my family and friends. While at the rehab hospital I also had to figure out how I was going to finish my last year of college. Thankfully, I still graduated on time.

I was discharged from the hospital after two months of intense rehabilitation. I continued doing therapy at home and as an outpatient, and continued to make very slow progress. My triceps, fingers on my left hand, and trunk control were much stronger than they were when I first became paralyzed.

I am still a C6/7 quadriplegic and need to use a wheelchair. I continue to improve little by little, but am hoping for a “cure” in the near future, and I know SRNA is working hard to support research to make this happen. I can’t say that I’m happy that this happened to me, but I am grateful for the insight it has given me. I have tried to honestly share my experiences with friends and acquaintances so that more people are aware of the challenges people with transverse myelitis face.

Gabrielle deFiebre