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How I got my diagnosis

Unlike the typical course of Tourette Syndrome, my symptoms kicked in much later. I might have had a couple symptoms, such as uncontrollable yawning when I was 15 and the onset of my OCD when I was 12, but the major tics didn’t kick in until I was 17.

A quick back story is that I developed whooping cough in January 2011, and after a couple months, my doctor noticed my wheezing wasn’t coming from my chest anymore. Anything could set it off — laughter, cold weather, exercise — and I would begin to wheeze for the next extended period of time. I was probably wheezing a couple hours of day, and eventually my classmates and teachers were used to it.

I would have fits where I felt like I couldn’t breath with gagging and coughing. So I was sent to a couple doctors, and after asthma was ruled out, the diagnosis was vocal cord dysfunction. Basically they thought that the whooping cough had sensitized my vocal cords, and now when I take a deep breath in, they closed rather than opened. So they sent me to a hypnotherapist for relaxation hypnosis, and that is when the ball started to roll.

Normally, hypnotherapy sessions last an hour, and after one session, about 90 percent of patients show marked recovery. I had it done 3 times and no progress was made. The doctor during one of our sessions asked if he thought this treatment was a joke. I had no idea what he meant, and he said that he noticed I was rolling my eyes a lot when I talked. I chalked it up to me just thinking and that I completely respected him.

After a couple visits, he was convinced that my eye rolling was a tic, as I did it quite a bit. My mom had even started to notice how much I did it and slowly I did too. He talked to a neurologist colleague who suggested that he put me on a medicine conventionally given for tic disorders since he thought the wheezing was probably related to the eye rolling. I noticed that the medicine made the wheezing much better. I wasn’t cured, but my limits had been reduced greatly.

We went to another local neurologist who only had to see me wheeze after running before he said it was tic, also based on my symptoms getting better with tic medicine. So they sent me to get checked out at Cleveland Clinic with a top pediatric neurologist. They wanted to rule out PANDAS since my tic onset had been very sudden, I had been taking medicine for my OCD for a couple years, and I had had strep more times than we could count.

The doctor at Cleveland said that I didn’t fit the criteria for PANDAS and that he thought I had spasmodic vocal dysphonia and not a tic. He switched me to a new medicine, increased my OCD meds, and to our dismay later e-mailed us telling us he was mistaken and not sure what I had.

At that point, my hypnotherapist was great and really going above the call of duty since he was a pediatric pulmonologist. He asked around and sent me to Strong Memorial to a doctor that specialized in pediatric tic disorders. At that point, I had developed more tics. I was rolling my eyes still, shrugging my shoulders, had a movement where I moved my right rib section in and out, had facial grimaces, still was wheezing, and had a variety of vocal tics.

I had almost no control over most of them and could suppress them for a bit. The doctor said that based on the presentation of motor and vocal tics for over a year, along with the OCD, that I had Tourette Syndrome. He explained everything we needed to know and decided to take me off my tic medicine for two weeks to see what the course of my TS was. We would make adjustments from there.

In those two weeks, I developed so many new tics. Snapping, hand clapping, leg tapping, tippy toe walking, nose touching, different vocal tics, sniffing, coughing, and the most infamous one of all: the Whoop. When I got the diagnosis, I didn’t want my siblings to know about it and only told my closest friends, who had already started to notice some of my tics.

The list was around 3 people. I was at indoor track practice one day. I normally just watch and help out since I can’t run. When I started touching my nose a lot — it was like I was rubbing it. When we transitioned from one gym to another, my friend who knew about the TS noticed it. Out of nowhere, I let out a couple whoops. She laughed and was entertained, as was I.

With all of my tics, I always tried to laugh them off, so I was never upset when my friend laughed at them. My other friend figured out if she said the word tomato that I would whoop. My other friend said drop the beat and I would do my sniffing tic. I thought that all this was OK since it was all in good fun.

My one friend was able to figure out how to calm down my whooping tic when I couldn’t stop by transferring to the nose touching tic. I really appreciated that. It was clear I had to be put on medicine again and once I was, I was able to control them a little bit better.

So that is how I got my diagnosis. I don’t resent my TS — it is a part of who I am. I let my friends make fun of it because I love seeing them smile, as they exploit my excessive dopamine levels. I might as well have fun with it since it is going to be around for a while.

I’d love to read what you have to say about this post. Feel free to let me know what you think and leave a comment. I love reading them.

JoeS

21 Comments

  1. Joe, we are going to post your last reply to Sabrina as a post on its own. It is wonderful, and everyone should see it. Thanks for sharing it!

  2. Hi. Jaden read your blog, you are one funny dude. Love to read your funny antics. This site is very informative and I’m learning a lot about TS. I pray that you don’t develop any worst tics. I know it must be hard dealing with this condition but I can see you are coping well. You are a very special little guy and you know I love you soooooooo much !!!! I wish I could see you soon but don’t know when that will be. If I had a million dollars I would buy a fancy RV and travel to see you often in NJ. Anyone out there want to send me a million bucks? You will be 10 soon, oh my, my baby is growing up. Even if you’re ten I will hug and kiss you till you scream. Well I will talk to you later. Keep blotting…

  3. Im 16 and I was diagnosed at 11 but my parents thought somethin was up with me for a long time before that. I dont really remember much about it except that soooo many doctors didnt believe anythin was wrong with me. Ive got tics and OCD and it seems like sooo many others have this too. Right now my OCD is the worst part tho.

    • My OCD flared up when I was 12, in 7th grade, and become obsessed with school. I felt I was doing poorly in every class, would be worried about projects that weren’t due for a month, and spent hours studying and doing homework. Sometimes i would fall asleep, wakeup, and do homework at 3 because I felt I hadn’t done it well enough. It got to the point where I felt sick when I tried to eat and would throw up my meals. It got better for a couple years and only had one major flare up like that with new compulsions and obsessions once last year. What are you doing to deal with it?

      • hi joe, i have an iep plan and i take medicine. i wish i could supress the ocd like i can supress the tics during school but it’s hard, especially when i have to take a test.

        • During my testing situations, the issue was that I would be so anxious from obsessing and performing rituals about the test that I would be anxious and have panic attacks the whole time. I thought that my answers were wrong, had to recheck them, and afterwards would be convinced that I had failed and that would only make the OCD worse. Honestly, the only advice I can give you is that helps me when I have an OCD flare up is something I found on the internet involving 4 steps. If you have a therapist, perhaps they could help you with it. Basically you recognize that this is an obsessive thought, then acknowledge that this is your OCD and not you talking, then shift your attention to something else starting with baby steps of 15 secs, and finally coming to terms with the thoughts as just thoughts over time. It really helped me out: http://hope4ocd.com/foursteps.php

          You just need to remember during tests that everything is going to be okay even if the OCD says it won’t be. When you start to get better it is honestly the best feeling in the world. Best of luck!

          • Joe, thank you for sharing that link. That could help a lot of people. We are going to post it on our Facebook and Twitter for people, too! Thanks for everything you’ve contributed to the blog already!!!

          • joe i checked out that website. thanks but it seems a little over my head. could u explain how it worked for u? thankssss!

          • I’d love to. My OCD got really bad about two years ago. I developed a really close friend through track and before I knew it, I was convinced that his welfare was in my hands. So, I had to do things like tapping, blinking, etc in five times and then count to five. I had to send the same good night text message every night and if I sent something trivial afterwards I had to resend it to ensure his safety. So, i did some research and found this Four Step Plan. For me, step one was all about realizing when I was having an obsessive thought. You need to learn to recognize that this thought is obsessive, so anytime I realized I was worrying over my friend’s welfare, I said to myself “Okay, this is an obsessive thought. I don’t actually need to tap and count to protect my friend. This is an obsession talking. I am having a compulsion when I want to retest him our goodnight message.” It takes getting used to, but you’ll get the hang of it. You red to call out your OCD basically. For me, in step two, I had to ere mind myself that is was the oct making me feel this way and making me want to do rituals. That I had something wrong in my brain and this wasn’t just my thoughts alone. None of these thoughts have any real meaning. Step three is the toughest and I had to wean into it. It is all about resisting the urge of the compulsions. Even for a minute at first. My friend helped me with this one. First i couldn’t tap and count in his bathroom and eventually it spread to his whole house, to our classes, to the whole school, to anywhere. In this step, say you really want to do a ritual, just gets yourself to think about something else or do something else for even a minute. As you get better, increase the time before the ritual. With step four, you revalue the thoughts for what they are, just thoughts. Nothing bad will happen. Remember do all the steps at one time every time you have an obsession. Let me know how it goes 🙂

  4. That’s some story. I was diagnosed when my parents thought I was bi-polar and that the noises I was making were related to that. I was only 8, and they didn’t have any real information back then (I’m 17 now), but bi-polar? Seriously? How could anyone think that. I’m thankful for blogs like this that get real information out there. Thanks dude.

    • I can totally relate. When I was wheezing even after the doctors had done everything, one doctor suggested it could be a sign of anxiety and had me checked out by a therapist. I went in knowing this was not all in my head and the therapist ruled that as well right away. I was really offended when the doctor thought it could be anxiety (I don’t blame him since vocal cord dysfunction as a tic is really rare). Plus, this one girl at school thought after a fire drill I was wheezing because I was trying to get attention and when i explained that cold air makes my vocal cord dysfunction act up, she suggested I was a hypochondriac. I don’t like to complain, but why would you (and it is even possible) to fake wheezing? I have never actually met someone with Tourette Syndrome in real life, so it is really nice talking to people who know what it is like. If you don’t mind, we should talk some more via email?

  5. When I first noticed a tic was when I was in a computer lab during summer school. That class was FREEEEEZING and I felt a chill coming very briefly, but it only stopped at my neck and didn’t go through my whole body. I thought “That was weird” and just shrugged it off. The next day I did the same thing, and even did it once when I was back in my normal classroom with normal room temp. Then I thought “Man I must be really cold because I’m having all these weird chills”. The day after that I did my head jerking a couple times throughout the day and I automatically thought of a tic. So I looked it up and before I knew it I had found out what I had. Not too long after I got a lot more tics: raising my eyebrows, blinking my eyes hard, jerking my head in every direction, flexing my hands, tensing my stomach, tensing/jerking my whole upper body, extending out my arm, opening my mouth wide, furrowing my eyebrows (opposite of raising them), and eventually from seeing someone else’s tic on youtube, the eye rolling tic as well. Now the mouth opening, hand flexing, and stomach tensing tics are gone, but my tics get worse when I’m cold. For the most part they are pretty minor. I do have this one tic that I can’t figure out if it’s a motor tic or a vocal tic. I kind of push my throat out and end up making a short puppy whining sound. I’ve done the tic without the noise, but I felt as if I was trying to hold it in. I’ve made all kinds of noises purposely, then when I imitated the noise I make, I actually had to tic. i don’t know if it’s because I’m making the noise or working the same muscles (because if you voluntarily imitate your tics, you will really have to do that tic. That’s what I tried to do to see if I had a vocal tic or not). If it’s a motor tic, then I would be classified as Chronic Motor Tic Disorder if I were to go to the Dr., but if it’s a vocal tic, then I would have Tourette Syndrome (had tics for a year and 3 months). For now I just say I have a tic disorder. Well I hope you enjoyed reading this as I enjoyed reading yours.

        • Glad to here that someone else had a later than typical onset of Tourette Syndrome. The majority of stories I read have kids getting tics when they are younger. Anyone to relate with actually is real nice.

          • yea, because it makes me think sometimes that it may not be real since it “should have popped up earlier” in my life based on the “average age”. What age did you get your tics starting?

          • sorry my name changed lol. The name I use is either J or JB, but for some reason “JN” decided to pop up

          • We didn’t notice or think of any tics until I got sick when i was 16. Looking back though, I probably always had tics. In 10th grade I had uncontrollable yawning and we never really understood why. I was always an energetic, fidgety kid who had trouble jet sitting down and relaxing. Plus i wouldn’t be surprised if i had a few vocal tics we never noticed as well. When the doctor told me I had TS, it all kind of ,are sense. I think my OCD kicked in before the TS, so that is why I presented at a later age.

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