What happens when a person has symptoms of a disease that he is unable to explain, strange movement disorders that are beyond explanation? There was a point in my life when my world collapsed from an obscure disease unknown to anyone in my family. Had I gone crazy? Were the pains I felt reality or just tricks of my own mind? I had only turned twelve years of age. My body was maturing; school was greatly impacting my sleep cycles; extracurricular athletics was intensifying to another level. Had my world suddenly caved into the stress, or was another, separate beast developing on its own?



I was beginning Grade 07 and attending a new school with an entirely new campus and a new set of teachers. Two weeks after the first day of school, I felt adjusted to the new middle school life: switching classes periodically, five different teachers, and a daily dose of PE. After I got in sync with the middle school schedule, I began to notice strange tingles, down my left leg. I figured these were only from sitting too long in the classroom in uncomfortable desks and lack of proper blood circulation. Weeks passed, maybe months, as these tingles persisted and progressed into twitches. But I paid no attention; it seemed rather inconsequential. Gradually, the condition began affecting my right leg as if the disease was spreading. One afternoon, during PE class, the condition took a sharp turn and took over my legs completely.



Running Day Wednesday was a weekly activity in which PE classes run off-campus on a predetermined route. The instructor gave us the signal to begin, and I attempted to spring and move ahead to the front of the pack. For no apparent reason, my legs froze. My toes clenched tight; calves flexed uncontrollably, and my hands fisted in pain. Without warning, my body tumbles onto the ground. In mere moments, the once motionless legs flail heedlessly. All in a matter of seconds, as mysteriously this attack occurred; I regained the normal function of my appendages. Dumbfounded and puzzled, I continued with my running day without addition issues. Only two days later and like the previous attack, the same set of events happened. This time it was in English class. From the clenched fists to the uncontrolled flails, I was reliving that nightmare. Although the attack lasted less than ten seconds, it was long enough to catch the attention of the teacher. What was I to say? It was beyond any explanation I could have come up with at the time. I quickly stood up and reassured my teacher that everything was fine, that I simply tripped on my own feet, clumsy me. Little did I know, these “trips” were far from fine. Ten seconds, that’s it. These spells were so short that I had no idea how to explain them. These episodes of mysterious attacks only bewildered me more.

“Take your mark.” It was the Spring 2007 Junior Olympic Qualifying swim meet. Maybe not a fast competition, but a minimum qualifying time was necessary to sign up. I was exhausted come time for my final swim of the afternoon. The starting signal started, and I dove into the water. I needed to complete two lengths of the pool, a short swim. Yet when I pushed off my turn, the same numbness shot through my legs and into my toes, rendering me motionless again. For two seconds my arms lay on the surface of the water as if they were dead. Both my coach and mother showed concern when I exited the pool. It was obvious that medical attention was desperately needed, lest I end up drowned by my own body.



With no complete understanding of the condition, I decided the best course of action was to talk to my primary care physician. His recommendation: undergo a complete MRI (magnetic resonance imaging) scan and see if any possible tumors or formations are pressing up or pinching the nerves of my spine. Thereafter, after consultation of the images with the MRI technician, my physician would refer me to either a neurologist or a neurosurgeon.



I sat in an MRI scanner for an hour, lying completely motionless. After enduring deep, loud bangs to ear-piercing screeches, the MRI image resulted negative for abnormalities of any kind. Two days later, I found myself sitting in another patient room at Children’s Hospital & Research Center Oakland: Department of Neurology and Neurosciences. Patiently I waited. With each passing minute my heart rate continually increases. Questions start to fill in my head. What if this new specialist is unable to assist me? Or what if she is unable to understand what ailment I have based on my vague descriptions? Could it be possible that there is no cure or medication to subdue my symptoms?



Then she came, her nametag clearly printed “Dr. Robin Shanahan.” She started to ask the general questions. What is the reason for your visit? How long have you exhibited symptoms? How regular are these attacks? Do you notice them at a particular time of day or during a certain activity? And the list continued. I answered her questions as best I could, though I still felt my responses did not suffice the specifics she needed. After what felt to be hours of ‘interrogation,’ she finally left the room to do research. Hopeful that she may have a solution, I still couldn’t help to think that Dr. Shanahan would diagnose me with an incurable disease. Shanahan entered the room and explained she has two possible predictions – both of which were unavailable to solid medical testing without expensive procedures, and both of which had radically different prognoses.

Without warning, she shouted at me “GO, STAND UP! RUN.” Not wanting to disobey the doctor’s order (albeit strange) I attempted to take off to a sprint. Not so unusual now, I froze again, dropped to the floor, clenched my fists and curled my toes. Another attack. Flailing uncontrollably and kicking about the patient room floor. I was almost embarrassed to have another episode in front of the doctor. Then she explained she had the proper diagnosis. It was an unofficial test, but suffice it to say, conclusive enough to give a firm conclusion on the disease I had.