Tourette diagnosis?
April 29, 2009 4:32 AM   Subscribe

I've just realised - or become prepared to acknowledge - that the tics I've had since childhood are probably Tourette's Syndrome. No cursing, but physical and sound stuff. I'm way past middle-age. Is there any point in getting a diagnosis?
posted by ikp to Health & Fitness (10 answers total)
Well, do they bother you? I do believe there are treatment options if they do.

I also think it's worth talking to a doctor about, because physical tics can be caused by other underlying conditions, such as growths in the brain (not to freak you out, just saying).
posted by sickinthehead at 5:16 AM on April 29, 2009

I'd be pretty reluctant to self-diagnose here. Unless you intend to actually do something about your behavior, or suspect that it may indicate a serious underlying medical condition of which you should be aware, I'm not sure what point there is in seeking professional help.

By the way, this has nothing to do with your age. I'd give the same advice to anyone. Diagnosis for diagnosis' sake is just a waste of time and resources. You need to have potential steps beyond that for it to be worth doing.
posted by valkyryn at 5:35 AM on April 29, 2009

Agreed with valkyryn, with the additional caveat that you don't want a pre-existing and misunderstood condition on your permanent record, especially if it's mild. I went through the same 'do I want a formal dx' question for my tics when I was in my 20s and came to that.
posted by Weighted Companion Cube at 6:37 AM on April 29, 2009

I'd be pretty reluctant to self-diagnose here. Unless you [...] suspect that it may indicate a serious underlying medical condition of which you should be aware, I'm not sure what point there is in seeking professional help.

Not seeking professional help on the basis of one's own suspicions about a condition amounts to self-diagnosis, doesn't it?
posted by onshi at 6:40 AM on April 29, 2009

Best answer: Yay! I'm always happy when I get to be the resident Mefite with Tourette Syndrome.

According to the DSM-IV:

Diagnostic Criteria for 307.23 Tourette's Disorder;

• both multiple motor tics and one or more vocal tics must be present at the same time, although not necessarily concurrently;

• the tics must occur many times a day (usually in bouts) nearly every day or intermittently over more than 1 year, during which time there must not have been a tic-free period of more than 3 consecutive months;

• the age at onset must be less than 18 years;

• the disturbance must not be due to the direct physiological effects of a substance (e.g. stimulants) or a general medical condition (e.g. Huntington's disease or postviral encephalitis).

If you've been having both physical and motor tics since childhood, then I would say yeah, you probably have TS. Tics can occur as parts of other issues (there is a huge overlap in people with OCD and ADHD and TS experiencing symptoms of more than one of these comorbid conditions without having them all to the point of full-blown diagnosis) and there are other neurological problems that can cause uncontrollable motions, though those are usually dissimilar to the sort of tics you describe (things like shaking/trembling as a result of Parkinson's, for example).

Ok. Well, you have an undiagnosed tic disorder. Is it worth getting diagnosed as Tourette Syndrome? It depends.

First off, unless you're a totally irrational hypochondriac, there's nothing wrong with "self-diagnosing" Tourette Syndrome. There is no way to test for Tourette Syndrome. There ARE physical abnormalities in the brain, but they cannot be seen until autopsy. I've has EKGs, EEGs, and MRIs, and they all came out clean. You can not piss into a cup and get flagged for Tourette's. So, what is the doctor going to go? They're going to consult the DSM-IV, and they're going to consider your symptoms. And yes, you want to consult with a doctor, but you can do this yourself.

Keep in mind that a lot of general practitioners may not know enough about Tourette Syndrome to diagnose you right off the bat. Approximately one in one thousand people in the USA has it, which is rare enough that they may have never run across it. When I first got scared enough of my inability to control my vocal tics to insist on being taken to a doctor (after a childhood full of incidents that just didn't make sense at the time), the doctor said I had a nervous tic disorder. Quite generic. I went along with it, and I told all the psychiatrists and neurologists I met that I had a nervous tic disorder, and none of them bothered diagnosing Tourette Sundrome. It wasn't until, after a year of very frequent tics that weren't going anywhere (I'd read the DSM myself, see), that I got the balls to say "I have Tourette Syndrome." Was it a self-diagnosis? Well, yeah, kinda. But as soon as I said it, all of a sudden the doctors agreed with me, and I was officially diagnosed.

So, what did the official diagnosis get me? What will it get you?

-Medication, if you want it. I strongly discourage you from receiving medication for something that you seem to have been coping with quite well for your whole life. The options are all antipsychotics, like Orap, Risperdal, Haldol, and Seroquel. I took them because, as a teenager, my tics were severe enough that they were causing me physical pain and severely impairing my social ability. Thankfully my TS calmed down in adulthood, and I stopped taking them. I would never, ever, ever take them again.

-Resolution. At least for me, there's always a sense of "if I just tried hard enough, it would go away." Or, I'll have a good couple of days, and think "I don't have Tourette Syndrome at all!" and feel like I've just been faking it the whole time (of course, it comes back). It helps to know that I really do have a lifelong, incurable disorder that is known to fluctuate in severity. I just accept it.

-Special Accommodations. I'm guessing, at your age, you're no longer in school, so I really doubt this applies. However, for anyone else out there: if you have Tourette Syndrome, you will most likely qualify as Special Ed during an Individualized Education Program evaluation, at least in the United States public school system. In my case, this was a godsend. I'm smart, but I really don't think I could have graduated high school without the support, patience, and understanding of the Special Education staff at my high school; they helped make up for the hundreds of assholes who didn't understand.

-Education. Hey, now people who know you will know that not everyone with Tourette Syndome has coprolalia!

-Harvard wants your brain. The Harvard Brain Bank has a shortage of brains with Tourette Syndrome. Put that inbalanced basal ganglia and shrunken caudate nucleus to some use after you're dead!

So, those are the pros to getting diagnosed. I want to address the con as put forward by Weighted Companion Cube. Now, I'm not trying to be a jerk, and please realize that I might be somewhat sensitive because I am diagnosed. But, permanent record? What is this, junior high? Yes, it was part of my school records as part of the aforementioned IEP, but this was never shared with the colleges I applied to. Yeah, somewhere it's probably in a medical file with my name on it, but doctors can't share information without getting a release. Do you think the people at Planned Parenthood or my clinic or my health insurance company know, or give a fuck, that I have Tourette Syndrome? Maybe it's a problem if you want to be, like, an astronaut, but no employer of mine has ever known I have Tourette Syndrome, because I chose not to disclose it (though that makes for a lot of "uh, yeah, that was a sneeze! a really weird sounding sneeze!" conversations). People are not going to know you have Tourette Syndrome unless they catch you ticcing or you tell them or you post about it constantly on Ask Metafilter like me.

The other con is what Valkyryn said. It's not really going to change anything. There's no cure. There's no special club. Gilles de la Tourette's ghost doesn't hang out with you and make you sandwiches. It's a lot less fun than obnoxious You Tube videos may have you believe. If you think it'll help you or bring you peace of mind, go ahead and get diagnosed, but if you've already accepted it, realize that a confirmation of your suspicion by someone in a white coat won't change anything.

Here is a similar thread, by the way.
posted by Juliet Banana at 9:05 AM on April 29, 2009 [10 favorites]

I was in a similar situation, with mild and mostly controllable tics which fluctuated in severity depending on stress. I finally went to my doctor last year and am currently on medication (Luvox, one pill a day) to help control it. It has helped dramatically without remarkable side effects, and the pills are not a major inconvenience to take, as I previously thought they would be. The benefit is not only in the reduction of tics, but also in the fact that I no longer have to intentionally control them. I consider the removal of this constant distraction a dramatic improvement in the quality of my life. I am 20 years old.

I would recommend seeing your doctor and gauging the neccessity of treatment only after trying it first. Tourettes is easily misundertood, so I would also be weary of taking advice from people who do not have it. For example, my psychiatrist insists that I do not have "real Tourettes" because I do not swear.

Good luck.
posted by BeaverTerror at 9:24 AM on April 29, 2009

It sounds like these tics haven't bothered you too much, if you are only now just reaching the point of acknowledging them officially. If they don't bother you too much, just keep living life. That's what I do. Welcome to the club, by the way!
posted by orme at 9:51 AM on April 29, 2009

Since people work hard to politely ignore nervous tics, most of us with mild TS are only vaguely aware of them. As I got older, occaisionally children would ask me things like, "Why do you blink your eyes like that?" and I gradually became more aware. Your phrase "prepared to acknowledge" is a good one, and describes the process I went through. Once I became aware, I went through several stages. The first was incredible self-consciousness, to the point where I sought out a specialist for treatment. I was prescribed medicine that did a great job diminishing (almost eradicating) my tics, but the side effects proved to be far worse than the tics themsleves, so this treatment was short lived for me. I'm happy that others in this thread have been treated successfully. In the end, I learned to accept things as they are. Looking back over my life, I really can't see how having a mild case of TS has held me back at all. If you want to see a physician about this, you should, but please seek out a specialist who knows and treats Tourettes. As others in the thread have commented, the degree of ignorance about the disorder is amazing, and doctors are not immune.

Welcome to the club indeed. Now that you notice it in yourself, you'll start seeing it everywhere. The club is much less exclusive than you might think.
posted by Crotalus at 10:41 AM on April 29, 2009

Wow, apparently there is a special club! High fives for everyone!

I just found this while poking around Wikipedia to see if there's anyway to hold a seance for Gilles de la Tourette so he can make us all sandwiches: Tourettism. Apparently, there are more abnormalities that can cause tics than I thought, and it might be worth getting a diagnosis just to get them ruled out.
posted by Juliet Banana at 11:12 AM on April 29, 2009

If you were to be diagnosed with Tourettes, having it in your medical records might be a good thing for when you get old and infirm. Don't want some doctor thinking you have something else that looks similar (OK, all you with Tourettes can stone me now for my ignorance), and give you meds for nothing.
posted by x46 at 1:34 PM on April 29, 2009

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