In Their Own Words

In each issue of the Journal, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

ADEM: Michael Gandy         
Tennessee

Christmas time is my favorite time of the year. The lights, the sounds, and, of course, the presents and being out of school. Almost every year I get some sort of a chest cold; nothing big and certainly nothing I can’t take care of myself. But this year was different.  I just couldn’t shake it. I started back my second semester of eighth grade with a major cough, drainage that made me sick to my stomach, and not to mention the worst headaches that I could not get rid of. The doctors gave me medication for a sinus infection and migraines. All the symptoms went away except for the infamous headaches. These headaches were really affecting my ability to perform in school, band, and in tennis. I spent many days staying home trying to relieve my headaches, but nothing would work. I went back to school still with my headaches and contracted another strange symptom.

I was running late to class, but I really had to go to the bathroom. So I told my teacher I was here, and hurried to the restroom.  I know something had to be wrong so I called my mom and she came and got me. I went home and tried again, still nothing. I was a little freaked out, but was still curious about what was wrong with me. The doctor was called and I was driven to the ER at Vanderbilt Medical Center. The ER doctors performed a spinal tap, an MRI, and a CT scan. They also performed an ultrasound on my bladder, because that was a major problem. I couldn’t urinate! My bladder was so big it wouldn’t fit on the ultrasound screen, because I hadn’t urinated in an entire day. They told me I needed a catheter. I knew exactly what that was and I definitely did not want one! They gave me the catheter and then took it out after my bladder was empty. I was then admitted to the hospital. 
           
I was a little confused about what was going on. I saw ER doctors, pediatricians, infectious disease doctors, urologists, neurologists, all in two days. They thought it could have been meningitis. Once they figured out it wasn’t, they didn’t know what to think. They talked to many doctors and not one of them could give them a straight answer. Finally, there was one neurologist with an answer. He told us it was ADEM, an autoimmune disease that affects the brain and spinal cord by attacking the myelin.

Well, it was settled and they started the treatment of IV steroids right away.  In the mean time, I could barely walk without falling over and still couldn’t urinate. A foley catheter was put in. While in the hospital I developed optic neuritis, which was terrible, because my eye hurt, and I couldn’t watch TV. Since I had been lying around from being sick even before I was admitted, I had lost a lot of strength. This is where the physical therapists came in. To be honest, I didn’t want to get up and walk around because every time I stood up, my ankles and knees cramped up and it hurt to stand. I walked around the halls and up and down stairs, which was really hard. I had checkups from a different doctor every day. I received many cards, baskets of food, and visitors. I began to become home sick. My mom went to my school to get my work so I could stay busy, but that didn’t work very well. After about eight days, my symptoms began to go away. I was getting relieved, but I still couldn’t urinate all the way. I was finally discharged after 11 days.
           
I got home, took a shower, and went to bed. I slept too much according to my dad so he made me get up. This really irritated me, but I knew he was right and I had to get up and do something. I was still catheterized by my parents every morning and night, which was a bummer, but I enjoyed being home. After about a week and a half, I visited my teachers and friends at school. It was so great to see them and to know that they were actually thinking of me. I gathered some more make-up work and headed home.
           
I went back to school about five days later, but only for a few half days. I didn’t have the energy to concentrate for a whole day, so I took it slow. By this time I was off the steroids and then I had another relapse. I had more headaches, balance problems, and the optic neuritis was back. They put me back on steroids again. I got off a few weeks later and had another relapse. Obviously, the steroids weren’t working, so the neurologist suggested methotrexate, a drug used in RA patients. It was injected subcutaneously once a week in my upper leg. Eventually, my symptoms began to go away. I went in repeatedly for MRI check-ups. The spots on my brain and spinal cord were getting smaller and less inflamed. It was a relief for my parents and me. I was glad to be back in school a few weeks later. I had to stay after everyday for a little more than a month to catch up with all my work. It was stressful, but I somehow managed to stay on the honor roll!
           
It is four years later and I am doing fine. I have no remaining symptoms except for the vision in my right eye isn’t as great as the left eye. I am playing tennis again, driving, and enjoying my senior year while shadowing the same neurologist that diagnosed me. I also did NYLF on medicine in Atlanta and I am in HOSA (Health Occupations Students of America). I have been accepted to the University of Alabama in Tuscaloosa and plan to do Pre-medicine. I am hoping to study in the field of neurology. I realized I wanted to be a doctor when I was diagnosed. I cannot wait to enter into my neurological studies and one day help in the advancement of neurological medicine.

Michael Gandy
ADEM survivor