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  1. #11
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    Re: Adult Onset Tourette Syndrome

    It's also very important to note that TS is one specific diagnosis of the category called Tic Disorders. And not the other way aroud. Adult onset of any tic disorder even if it ressembles TS cannot by criteria be described or diagnosed as Adult onset of TS and the Name canot be used to describe other tic disorders because it must meet the specific diagnostic criteria of the DSM-5.

  2. #12
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    Re: Adult Onset Tourette Syndrome

    Hi Gary

    All of the diagnostic criteria you listed indicate that tics have to have started before age 18 years.
    I had absolutely no tics at all before 2015. (I was 45 at the time)
    I have persistent motor tics (legs, shoulder, wrist hand) for four years now.
    No tics at all in childhood.

    Where does that leave me in terms of the tic disorders you listed? I think the closest is persistent Chronic Motor Tic Disorder, but I didn't start having any tics until age 45.

  3. #13
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    Re: Adult Onset Tourette Syndrome

    Sorry if it took me a while to respond. It can take me a long time to write a response and longer to edit it.

    Those are good questions. Most if not all can't be simply answered for a few simple reasons.

    1 - The 3 listed tic disorders are classified as tic disorders after ruling out secondary external causes for the tics like medication, brain trauma, and other illnesses such as Parkinson's so all other external or secondary causes must be ruled out.

    2 - Tic disorders lack proper study. even Tourette syndrome is still misunderstood by not only the general population. from personal experience many medical professionals have little to no more understanding and knowledge because in many cases they often disappear or become moderate after adult onset and so it's still pretty much focused on children and hence still just commonly viewed and seen as a childhood disorder.

    3 - Comprehensive Adult studies even for TS are almost nonexistent probably because of the fact that it's still seen as a childhood disorder. My personal opinion is there's no significant life threatening or debilitating large scale potential to make big bucks.

    There is also one important thing to take into consideration: Tics are not constant and fixed.They can come and go away for years and are not fixed in time duration and actual tics. Are you 100% convinced beyond a doubt that you did not have any form of motor or vocal tic before age 18? I recommend you take a time travel trip into your memories and scan though behaviors and patterns and as you can when if you find anything potential stop the rewind button and start paying more attention to details. Doesn't mean it will work but it can help identify what could possible have been mistaken as just a bad habit. My first recollection of non obvious visible repetitive motor tics were seen as a ritual I'd constantly be scratching my tush crack and yanking up my jeans by my male things. I've worn holes through more pairs of jeans from pulling and scratching that area than anything else. They would still look brand new and have a hole. When playing baseball at bat they were in an actual pattern. At the time they were seen by all including myself as a weird ritual. They were repetitive and had a pattern but were unconsciously controlled. I'd walk down the street spitting and scratching uncontrollably. And to make a point I only got a confirmation it was TS after researching the day before my 53rd birthday.

    Tics come in as many shapes and forms as people. They also vary in severity, consistency and visibility from one extreme to the other. and they only need to meet the specific criteria to be classified. They can come and go and change, I call it "replacement therapy as a joke" where my body would give one things a break for a while and replace it with another. Shoulder shrugging and twisting and squirming at the waist were my main tics that never seemed to fade along with nose movements in many different shapes and forms. And scratching too.

    Vocal tics are probably the most commonly misunderstood of them all simply because of the name, "vocal" and how the swearing extreme is portrayed on media. Pretty much anything that makes noise from the head is a vocal tic. Tongue and lip, clicking clacking smacking and so on are vocal tics. Throat clearing, sniffing, snorting and spitting are also vocal tics. Yes spitting go figure. If I had known that, I would have discovered that fact I would have been able to pinpoint the exact time place and age that vocal tic started a loooong time ago.

    All that to say there are as many potential other causes as there are tics and only a complete comprehensive and thorough medical and neuropsychiatric review from a competent group of doctors has any potential for coming to any diagnostic.

    EDIT: Sorry if this isn't much help and simply informative (hopefully)

  4. #14
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    Re: Adult Onset Tourette Syndrome

    Hi Gary
    I appreciate the time you took to respond to me. It has been a frustrating four years, I will say, because of some of the things you mentioned - not much info out there about these tics / repetetive movements that I have.

    To give you a bit of background on my childhood, I have a sibling who was adopted by my parents. He was diagnosed with Tourette syndrome in his early years. My parents became enveloped in the Tourette community, reading everything that was available, and meeting with Dr. Duncan McKinley, who is considered to be a leading expert among "leaky brake" disorders, as he calls them. My parents were even on the board of the Tourette syndrome chapter in our community. All of this was in an effort to get as much information as possible so that they could help my adopted brother have the best chance at success. They became so attuned to what "tics" and repetetive behaviours look like, that they were able to spot even the most subtle tics in people they saw just walking past them on the street.

    So, when I say I didn't have tics as a child, I know this for a fact. I am certain that if there had been even the slightest hint of a tic, it would have been spotted by my hawk-eyed parents! LOL! The first tic I ever remember having was in March of 2015.

    As far as having tics as a result of some other disorder, that hasn't been completely ruled out. I have been to my family doctor, and three neurologists of varying specialties. They have ruled out anything that one might consider "bad", such as MS, Parkinsons, tumours, and a variety of other rare auto-immune disorders. Nothing, of course, is easy to figure out. I have been told that the motor movements I experience are much more "tic" like than anything else (such as myoclonus, chorea, tremor, etc). The most recent neurologist, who specializes in movement disorders, has said that she is certain it is an adult onset tic disorder. She has said it is very rare to have this without some other condition to cause the tics, and that not much research has been done on it. That is why she is continuing to investigate with ever more bloodwork, and another MRI (this time with contrast) scheduled for 6 months out just to make sure we aren't missing something. She recognizing it is frustrating to have no cause when the condition came on so suddenly.

    If it starts to impact my quality of life more greatly that it does now, I may consider a medication trial - however, at this point, the potential side effects outweigh any benefits, in my opinion.

    The tics I have started literally out of nowhere in March 2015, and have progressed from very mild, occasional (4 or 5 per evening) to more varied, obvious, and disruptive tics that happen sometimes hundreds of times per hour - more often when I am under stress (or a passenger in a car for some reason).

    I do appreciate having someone to chat with this about - so thank you once again for all of the information - it is quite helpful.

    Enjoy your evening!

  5. #15
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    Re: Adult Onset Tourette Syndrome

    From one of the relatively few articles on the subject:

    Tic disorders are generally considered to be of pediatric onset; however, reports of adult-onset tics exist in the literature. Tics can be categorized as either primary or secondary, with the latter being the larger group in adults. Primary or idiopathic tics that arise in adulthood make up a subset of tic disorders whose epidemiologic and clinical features have not been well delineated...

    The epidemiologic characteristics, clinical phenomenology, and optimal treatment of adult-onset tics have not been ascertained. Twenty-six patients with adult-onset, primary tics were identified from prior case reports. The frequency of psychiatric comorbidities may be lower in adults than in children, and obsessive compulsive disorder was the most common comorbidity. Adult-onset primary tics tend to wax and wane, occur predominantly in males, are often both motor and phonic in the same individual, and are characterized by a poor response to treatment.

    We know little about adult-onset tic disorders, particularly ones without a secondary association or cause. They are not common, and from the limited data available, appear to share some but not all features with childhood tics. Further research will be important in gaining a better understanding of the epidemiology and clinical manifestations of this disorder.

    How Much Do We Know about Adult-onset Primary Tics? Prevalence, Epidemiology, and Clinical Features
    Some other academic articles if you haven't seen them already:

    Google Scholar

    Google Scholar

  6. #16
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    Re: Adult Onset Tourette Syndrome

    My pleassure and although tics aren't fun and having them as an adult is even more frustrating because of the stigma and less of us have them though adult life.

    Since the tics had been getting worse and probably my tolerabilty to them more so. I fought with a psychologist, my GP and cardiologist for months to replace my beta blocker (heart meds) with Clonidine as it served the basic same purpose but is also known and used to help with TS although not a fact they seemed to understand or grasp. It pretty much helped along with clonazepam to reduce my anxiety. Greatest comment I heard one day was "You don't have Tourette's" to which I had a big smile and said Thanks It erased many "was the coke good?" And "Think maybe a kleenex might work?" to name some of a million snode comments and all the occsaional mocking and imitating my siffing and snorting during my working years.

    So although the tics ain't fun and there ain't much info or support for us adults knowing you're not alone is somehow comforting whatever the reason or cause (really happy to hear they ruled out the major serious things like MS and parkinson's)

    The forum can offer one thing that is better than medication and that is just peer support and since we're a serious and silly bunch you might find that just hanging around to hang around while you go through the stress of finding out what's causing the tics could be beneficial.


    Your diagnostics journey would probably add valuable insight and might shed more light on the possibility of Adult onset TS being a reality and it wouldn't be a first in proving the specialists and the DSM wrong.

    Hope you stick around! Feels comforting not being the only one with a tic disorder around here
    And please keep us updated one any progress or updates
    Last edited by Former Member; June 11th, 2019 at 11:33 PM. Reason: Spelling mistakes as usual

  7. #17
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