A Year of Questions

Have you ever had your foot fall asleep? Not the tingly-needle-poking kind. More of the "numb" feeling? On September 9th, 2010, I felt that numb feeling in my fingertips. I remember riding in the car with my mom, and telling her about the weird sensation. We looked at each other and wondered what may be going on.

But the next day, that feeling had spread to my whole hand. Soon enough, my whole right arm
felt as though I had a thick sleeve and glove on it. I went to a few doctors about it. None of them could come up with any explanation for this unusual feeling. That is when I had my first MRI. At that point, I had braces on my teeth. When the doctors tried to "read" the MRI images, it was quickly discovered that there was a huge reflection from the metal in my mouth, and the MRI images were unreadable. The doctor figured there wasn't anything on the scans anyway, and dismissed it as "teenage anxiety." Ha!

Two weeks later, the strange sensation subsided. My family decided to take a camping (okay, okay, we were in our RV. But we went to a campground! That's still camping...right?). As we arrived at the campground, I began complaining about pain in my hand. The next morning, I woke up and my whole body was tingling, head to toe. The kind of feeling when your foot falls asleep; this time the tingly-needle-poking kind. My parents suggested I sit outside in the sun to get some vitamin D. I just wanted to sit in bed, sleep, and not move.

The following day, we ended our camping trip a little early. We were about 30 minutes away from my grandparents house, where we decided to have lunch. Upon arriving at grandma and grandpa's, I went immediately to the couch. I pulled out my homework to try to get some done, but soon realized I was having difficulty reading. The words were jumping all over the page. My dad looked at my eyes, and saw them "jumping." The best way I can describe what I was seeing, is to reference those old scrolling televisions. This resulted in a call to the doctor, who said they could see me in 3 weeks...we all decided that was too far away, and I needed to be seen sooner than that.

I stayed home from school the next day. A family friend who used to be a nurse told us to go the emergency room at the University of Minnesota. As soon as we got there, numerous doctors, nurses, and medical students filed in and out of my room to try to figure out what was going on with me. Finally, the consensus was to have me spend the night in the hospital and have a lumbar puncture the following morning- Ouch!

The lumbar puncture didn't show anything, and I seemed to be improving, so I was discharged from the hospital after a two night stay. However, the neurologist ordered another MRI, which meant I had to get my braces removed four months early. The day after being discharged from the hospital, I had my braces removed, and had an MRI.

Wanting to be a normal teenager, I went to the middle school dance directly following my MRI. I was greeted by my best friends, and warmly welcomed by my teachers. It was great to see such friendly faces after being in a hospital room for a couple of days.

It was this MRI that finally brought answers to my strange symptoms. I had a single lesion in the center of my brainstem. No other lesions were visible, so I was diagnosed with Acute Disseminated Encephalomyelitis, or ADEM. Another name they gave me was Clinically Isolated Syndrome. In other words, they still didn't know what was going on with me, and this label seemed "good enough."

Things seemed to be going alright, which lead me to try to return to school. As I prepared for school, I noticed a strange sensation in my lips. My lips almost felt cold, and numb. Luckily, I stayed home from school, because only a few hours later I found myself back in the hospital. The neurologist put me on high dose steroids (1 gram per day) for 5 days. The neurologist showed us the lesion on the MRI, and we finally had an idea of what we were dealing with.The next 14 months were filled with dozens of doctor appointments, weekly occupational and physical therapy, and little to no school. I missed almost the entirety of my 8th grade year of school. Some friends came to visit me at home, which I was grateful for, however, many friends were too afraid of my condition. They were afraid I would be too tired or dizzy, or in too much
pain to visit.

On my birthday in July, I can remember wanting to go water tubing with my cousins, but being in too much pain. I didn't want to move my arm due to the intense pain. Eventually, the pain subsided, with a brief appearance on occasion for the next few months. However, the pain returned along with severe headaches in November, and I returned for another MRI. What this MRI showed changed my life forever.