My Tourette's History, Part II

So let's catch up. Last time you read, I had just gone to the emergency room for the first time. They gave me a CAT scan and some other tests, all of which all ended up negative. At this stage in the game, all of my twitches were of a purely physical nature - no vocal tics at all. So let's continue...

I went to quite a few neurologists and hospitals over the next few months. I was seen by pediatric neurologists in my hometown hospital of Mission Hospital and at Emory Hospital in Atlanta, Georgia. Not only did the doctors give me various unsatisfactory diagnoses, but they also gave different definitions of "Tourette Syndrome" and why I did not have it. Due to the irregularity of my case and my very persistent mother, I was able to be seen at the National Institute of Neurological Disorders and Stroke (NINDS) , part of the National Institutes of Health (NIH) in Bethesda, Maryland.

Just as an explanation of how cool that is, NIH only sees patients that were unable to be diagnosed or helped by other doctors around the country. They also do not provide treatment, except as part of an experiment. This way, they can focus on furthering the boundaries of medicine and not on routine procedures. I had the top 20ish neurologists in the country (plus a few interns) all focusing and talking about me and my condition. They took a video of my tics, and asked me and my family various questions about how the tics felt, when they started, and so on. By the time they came around to giving their diagnosis, the doctor assigned to talking to my family one on one (Dr. Ejaz Shamim) informed us that I had a tic disorder. "Okay, that sounds about right. Which one?" we asked. Apparently that was it... just a generic tic disorder with no real background, no character. They said that most likely the virus I had prior to developing the twitches managed to travel to my brain and mess up some wiring, causing me to have intermittent involuntary 'tics.' I did not quite have enough symptoms to be labeled as "Tourette Syndrome," but I was close.

It sucked for those few weeks that I all I knew was that I had a "tic disorder." People would ask why I was twitching and all I could tell them is basically what they could already see for themselves. The smart ones would ask "do you have Tourette's?" I would tell them no, but almost. It was difficult because I felt somewhat trapped by this incurable, undiagnosable thing that may or may not go away in time.

I remember the day (August 12, 2007) when we got the call from the doctor's office. My mother was driving me to take my driving test for my driver's liscence at the DMV. Apparently the doctors at NIH were so fascinated with my case that they consulted even more doctors and had finally decided that I did, in fact, have Tourette Syndrome. I was so relieved!! I felt like I had finally landed after falling for a very long time. People often ask me "were you sad when you found out you had Tourette's?" almost as if I hadn't noticed. "No way!" I tell them. "I'd never felt better!"

I performed marvelously on the driving test and got my lisence on the first try. As the final part of the drivers license routine, the DMV lady behind the counter asked "do you experience tremors, uncontrollable movements, blackouts..." She continued with a long list of medical issues that could perhaps impair one's driving abilities, but she had already said the important things first. My heart sank with tentative disappointment as I responded nervously with "um... I have Tourette's."

"Okay," she said with a questioning look. All that she asked was: "how do you spell that?"

(To be continued)