My Original Misdiagnosis

As I had posted earlier, my Tourette's tics had originally started to present themselves back in August of 2006. At the time, I had no idea what was going on. I never would have thought that it was Tourette's Syndrome. I just thought it was a stress related "twitch", and lord knows, I had some stress in my life.

I spoke to my psychiatrist about it, and he prescribed medications that practically made me a zombie.....let me back up a bit.

I've noticed a problem that is prevalent in the modern psychiatric practice these days...laziness. I was mistakenly diagnosed as being rapid cycling bipolar when I was 19. This was primarily because I told the doctor that my mind was racing most days(ADD), and I was depressed on a frequent basis, and that the two bounced back and forth. Looking back, I have never had a manic episode in my life. I have never been bipolar.

I move. I change doctors. My initial consultation with my new doctor is only twenty minutes. I am 24 or 26 now. I tell the doctor that I am still depressed but at 19, I was diagnosed as rapid cycling bipolar. Instantly, without talking to me about my symptoms or my history, he assumes my medication isn't working. He prescribes a NEW mood stabilizer, anti-psychotic, and anti-depressant. This happens until I am 33.

By the time I am 33, I have been on every major psychiatric drug on the market, 90% of which I probably should not have been on. So, I go into my doctor, tell them I'm twitching, the prescribe me another anti-psychotic, or another mood stabilizer. They treat it as a psychological issue for three years, and don't think to look into it as a neurological issue.

In April of this year, I am out on short term disability for depression and anxiety. I'm locking myself in the bathroom at work 5-6 times a day to have a panic attack, and, needless to say, my twitching is getting worse. I am also having an issue controlling my bowels(only in stressful situations), and this worries my primary physician. She sends me to a neurologist to get the nerves in my spine tested to make sure I do not have a condition called Cauda Equina. While at the neurologist, I ask him about my twitching, explain my history, and see if there is anything he can test for.

He immediately rules out Tourette's. You have to have the tics present in childhood for you to be diagnosed as TS. There is no such thing as "Adult Onset" Tourette's Syndrome. He sends me for a CAT Scan, an MRI, and an EEG. All come back normal. He's stumped. So he refers me to the Mayo Clinic.

I arrive at the Mayo Clinic on Cinco de Mayo. I go through my examination, and that day, I am twitching very badly. The doctor also says that because of the time of onset, I can't, by definition, have Tourette's. She asks me about my medication history. I explain to her the list of medications given to me, than in hindsight, were probably in error. Many of those medications were neuroleptics. Neuroleptics cause a neurological condition called Tardive Dyskinesia. That was my diagnosis.

I was thrilled to finally know what I was dealing with. To have a name to it. To know it was something that could be treated with medication and that it wasn't a tumor or something that was going to kill me. And then the next day I went on Youtube.

I pulled up videos of people with the condition. They looked nothing like me. They weren't dealing with anything like what I had. Tardive Dyskinesia affected the mouth and jaw more, making it look like you were chewing really slowly. Watch:



I felt really bad for these people. They were going through hell, but it was a different hell than the one I was in. I had never seen myself tic, and I was really apprehensive about documenting the tics myself, but I decided to record them. I set my wife's laptop up on the coffee table one afternoon, and, when I felt a tic coming, ran over and pushed record. This was the result:



I decided to get a second opinion. I was recommended a doctor by Barrow Neurological Institute. In the 90s, he used to be the director of their cognitive neurology department. Within 30 seconds of seeing me, he said "You have Tourette's". I said, "But I'm 34". He explained that, as a child I must have had it, but the tics were so minor that they were practically unnoticeable. Neurological disorders run in my family. My uncle has Parkinson's. My brother was also diagnosed with Tardive Dyskinesia, but with the information I have now, I'm sure it's also Tourette's Syndrome. Unfortunately, because of family issues, they don't know about my diagnosis. But that is reserved for another post.

As I have posted before, the medication has made some things better, some things worse. It is nice to have a name to what is bothering you; to know who it is that you are cursing. It makes it easier to control it, to live with it, and to get the support that you need. My long term disability paperwork is in final review. It should take 2-3 weeks to get an answer. I miss working. I miss being able to communicate face to face with the outside world. I miss being "normal" in a sense. Hell, I'm still getting used to the noises and the movements I make in public myself. But, as they say, all things get better with time.