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Late on-set of tics/TS

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  • Late on-set of tics/TS

    Hi All,

    I am just wondering if there's anyone else out there with a similar case as mine.

    Three years ago I woke up in the early AM; going to follow my regular routine and go to work. As soon as my eyes opened, my head was 'jerking' back and forth non-stop. This 'shaking/jerking' was completely out of nowhere. It was terrifying. Later on during the day, my hands, arms, legs...basically my entire body would take turns 'jerking'. I could somewhat control it from time to time but overall, it was non-stop. I went to the hospital and was told I had tremors.

    To make a long story short, after several visits to my GP, Neurologist and even the top Neurologists in Canada in Montreal, I was told I had a Tic Disorder. Of course, I did my own research and asked if it was in fact TS. My Neurolgist said yes, but couldn't formally diagnose it as that because the 'on-set' was not before the age of 19.

    During this year of testing, my tics increased and to this point (three years later) I experience a large amount of vocal tics, motor tics and even sensory tics. I have always been 'particular' with everything I do and have had 'intrusive thoughts' so I now see that this is a mild case of OCD. I also have anxiety issues, mostly because of the TS as well as concentration difficulties. I have been off work for over a year, unfortunately, because the field I was working in before the tics emerged is now too stressful.

    Looking back on my childhood, it seems that I did have a few 'mild' tics such as sniffing my hair, clicking my tongue and even 'intrusive thoughts/dreams' but nothing that stayed with me constantly. I'm certain there were other 'habits' that I have just not thought of.

    Are there any other adults who have had a similar experience with TS? To me, everyone's body is different and in turn reacts differently. No one can explain to me why my on-set was late and because of this, they refuse to clinically diagnose me with TS. Personally, I know it's TS, as does my GP. Why must it be before the age of 19? I'm certain there's others like me out there and given the fact that there's hardly any research out there on TS, would it be impossible to believe that it may in fact show symptoms after the age of 19? I don't think it's a far fetched idea at all. What does everyone else think? Any input or sharing of experiences would be so helpful. Thanks for reading. -Kelly

  • #2
    Re: Late on-set of tics/TS

    I was diagnosed at age 30 although my symptoms first became noticable when I was in University - I would come home on weekends and my parents would notice I was blinking a lot - which led to a trip to the optomitrist. LOL. Anyways, it obviously was more than that.

    Looking back, I can remember certain 'habits' I had when I was younger, but they weren't causing any issues back then, and I do recall hiding them as well (i.e. turning away so not to be noticed).

    Perhaps I was diagnosed as I recalled these habits prior to being 19. I don't know why there would be that seemingly arbitrary age though?


    • #3
      Re: Late on-set of tics/TS

      Unfortunately many physicians feel the need to stick tight to the "diagnostic criterion" and this is often why children who present with symptoms of TS plus are often not diagnosed until they are 6 or 7. Many will say it it too early.

      TSFC Homepage


      • #4
        Re: Late on-set of tics/TS

        My TS didn't appear in a significant way until I was about 21.


        • #5
          Re: Late on-set of tics/TS

          It's nice to know that there's others who displayed significant symptoms later on in life...I knew you were all out there...just needed to read it for myself I guess! Thanks for the replies.