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Old 01-18-05, 01:06 PM
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The Tics of Tourette's Often Go Undiagnosed

(I know I'm out of my league here but I thought this article might help some)


By JANE E. BRODY

Published: January 18, 2005


A woman who lived for years in my neighborhood periodically appeared at a window and shouted obscenities into the street. Passers-by were appalled, but I felt what had to be the painful humiliation of someone who had no ability to control this seemingly antisocial behavior.

I realized that the woman was afflicted with Tourette's syndrome, a lifelong neurological disorder with symptoms that contrary to popular belief, only rarely include the involuntary shouting of obscenities.

I now know that the disorder is associated with a wide range of confusing symptoms that often result in delays in diagnosis and treatment that can last years. The problem was eloquently described in a two-part article last August in Contemporary Pediatrics.

In his report, Dr. Samuel H. Zinner, a pediatrician at the University of Washington specializing in developmental and behavioral problems, points out that the syndrome "often goes undiagnosed or misdiagnosed."

"Misconceptions about this tic disorder are customary," he adds, "with the syndrome often perceived as characterized by bizarre, fitful behaviors or comical outbursts of uncontrollable profanity."

The fact is that "relatively few patients yell out obscenities," Dr. Zinner said, adding that "most patients are affected only mildly and usually escape notice," even by their doctors. Complicating the diagnostic puzzle is the ability of patients, consciously or otherwise, to suppress their tics when expressing them could be embarrassing, as would occur in visits to the doctor.

Dr. Zinner adds that the tics of Tourette's "range widely in their severity, form, frequency and intensity" and are associated with other disorders that "are usually more serious or disabling than the tics themselves." These may include attention deficit hyperactivity disorder, obsessive-compulsive disorder, learning disabilities, anxiety or mood disorders and difficulty sleeping.

These associated problems are often what first brings the problem to medical attention and may result in doctors' overlooking the underlying tic disorder.

The disorder was first medically described in 1885 by the French neurologist Georges Gilles de la Tourette. But until the 1960's it, like other conditions later found to have neurological bases, was incorrectly viewed as a psychological problem. Psychotherapy cannot cure it and, despite what doctors and therapists sometimes tell parents of patients, people do not outgrow it.

Dr. Zinner says the disorder is far more common than is generally recognized, even by the Tourette Syndrome Association, which estimates that 1 person in 2,000 is affected. Rather, recent studies suggest that the real number of those with chronic tics is more like 1 in 100, suggesting that 750,000 children in this country have Tourette's. The disorder affects four times as many boys as girls and often runs in families.

Despite having chronic brain disorders that often interfere with learning, children with Tourette's do not quality for coverage in most states under the Individuals With Disabilities Education Act, which helps finance special education.

A Wide Variety of Tics

People with Tourette's are often ridiculed and stigmatized as weird, scary or even crazy, depending on the nature of their tics and how obvious, complex and uncontrollable they may be.

Tics come in many forms, both "phonic" (sound-producing) and "motor" (abnormal movements), and each can be either simple or complex. Simple phonic tics include chronic sniffing, grunting, throat clearing, clicking and screaming. Complex ones include speech interruptions like stuttering and repetition of single words or phrases and coprolalia, the expression of socially unacceptable words or phrases.

Simple motor tics may manifest as eye blinking, nose wrinkling, jaw thrusting, shoulder shrugging or neck jerking, or the tics may involve more complex movements like jumping, touching, twirling when walking, retracing steps, imitating someone else's movements or making sudden obscene gestures.

Symptoms typically become more complex with time. They usually first appear in early childhood, by age 6 or 7, as simple motor tics, with phonic tics and more complex motor tics developing in the next few years or perhaps not until adolescence.

Expression of tics typically occurs in bouts that may be separated by seconds or minutes, weeks or even months. Their expression is often preceded by a premonitory urge, not unlike a worsening itch that finally demands to be scratched. Performing the tic brings temporary relief.

Consciously or otherwise, people with Tourette's often learn to suppress their tics, but there is a cost. The discomfort and distraction caused by the unfulfilled urge can be more disruptive than the tic itself. When suppressed tics are finally released, they are often more intense and frequent.

Certain stimuli - like noise, a word or an image - may provoke the urge for tics, and conditions like stress, anxiety, fatigue and intense emotional excitement can prompt their expression.

More than half of Tourette's patients have attention deficit hyperactivity disorder, and signs of it may appear even before the tics. Other neurological problems associated with the disorder include loss of impulse control, obsessive thoughts and compulsive behaviors, learning disabilities and difficulty organizing, planning, making decisions and following rules.

People with Tourette's may also suffer from generalized anxiety, phobias, panic attacks, depression and sleep disorders. A few experience sudden explosive attacks of rage.

Suppressing Symptoms

Some people with Tourette's saw a glimmer of hope in a recent report of one man with debilitating symptoms of Tourette's that were immediately relieved by deep brain stimulation. This treatment involves the implantation of electrodes into the part of the brain that controls movements.

The electrodes are attached by wires to a pacemaker implanted in the chest, a technique used with some success to curb the abnormal movements of Parkinson's disease.

The technique has been tried on several patients with Tourette's, but it is still highly experimental, with no data yet on its overall effectiveness, possible complications, side effects or duration of benefit.

Another relatively new approach for severe, very specific tics involves temporarily paralyzing the affected muscle group by injecting it with Botox (botulinum toxin), which can suppress the tic for several months.

Meanwhile, depending on the nature and severity of a patient's symptoms, medications are available to treat them. They include alpha-adrenergic agonists like guanfacine (Tenex), neuroleptics like haloperidol (Haldol) and benzodiazepine clonazepam (Klonopin).

As with all drugs, there are side effects, and Dr. Zinner urges the use of the lowest dosages and fewest drugs needed to help a person function effectively. Because tics may wax and wane, months of therapy may be needed when trying new medications to accurately determine their effectiveness.

Dr. Zinner, however, cautioned against a common tendency for families to use a variety of alternative remedies and dietary restrictions, since none have proved useful.

Information from the Tourette Syndrome Association is online at tsa-usa.org or at tourette.ca.

http://www.nytimes.com/2005/01/18/he...d=2&oref=login
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Old 01-20-05, 04:47 AM
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Very interesting, thanks for sharing.

I found out a few years ago that the less Dx's, the better. I've been avoiding the TS issue for a while now. I've sort of mentioned it to the neuro and he just nods....and to the psychologist, who also nods....which makes me think I am losing my mind. So I have been keeping my mouth shut about it again. Maybe it is all in my head.

sigh.

Cyndi
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Old 01-31-05, 09:33 AM
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Yeah thats what i found too

I had to wait ages to see this neuropsych who seemed so reluctant to diagnose anything. Like he asked me about a million questions which all the answers were yes so i assumed he was on to something. Then he just didn't want to give me any more than that. Yes it sounds like you probably have tourettes. But nothing more. No help, no follow up appointment. No definite diagnosis

My friends tell me i'm being stupid and that theres nothing wrong with me, yet strangers comment on my tics all the time. Im getting totally mixed messages...

And other than me i've never even met anyone with tourettes so i don't even really understand it properly. The first thing that isnt just something ive read was this movie Niagara Niagara that was on tv the other night. I have no idea how accurately that portrayed it though. At least it was nothing like that stupid Deuce Bigalow. I think that movie is the reason why my friends think I couldn't possibly have Tourettes.

I ignored it for a while but I don't think I can do that any longer. I think it is getting worse. I don't know if now that I have this idea in my head I am just giving myself an excuse for things I wouldn't have normally let myself get away with. Maybe that's why doctors are so reluctant to diagnose

Hmm anyway end of ramble now. Just needed to vent a bit. I have no one to talk about this to. And its a pretty massive thing finding out there is an answer to 15 odd years of crazy things you had no explanation for before
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Old 02-05-05, 05:16 PM
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It would explain a lot, but since I'd probably opt to NOT take the medication they would give me, it would be pointless to persue the Dx. They prescribe neuroleptics for Tourette's which causes weight gain, lethargy, flattened affect, and tardive diskinesia. I have enough issues, that I don't want to gain weight or get tired and depressed.

Maybe the Dx would bring some closure, but I guess I will just hold off on it. I think I put too much importance on diagnosis sometimes. I know where you are coming from though, so if you ever want to talk, PM me.

Cyndi
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Old 02-14-05, 12:56 AM
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I have dealt with tourettes my whole life, I first noticed something was up when I was 11 or 12, I am 34 now, and I have always done a good job at hiding it. I just found out a few years ago there was a name for this.
The reason I am just now looking into this further, My 5 year old daughter now has it, and its breaking my heart to see her have to go thru this, as I know how cruel kids can be, and she is so full of life I would hate to see this take away from that. She hasnt been dx yet, I am waying my options and I am hoping someone can point me in the right direction.
I am just glad that she has me to help her with this, I thought I was crazy or something growing up, and I just admitted to my Mom that I had it.

Someone please give direction, I would hate to put her on meds, but they are getting worse.

PP
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Old 04-05-05, 06:41 PM
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PP,

Maybe she should talk to your daughter about it. Explain that there is medicine that could help, but also let her know about the side effects. It's her tics, her social life, and her body...she should be informed about the options (as well as a 5 yr old can comprehend) and let her make the ultimate decision. I for one, would have truly appreciated knowing then what I know now, it certainly would have changed the decisions I made.

Also, read as much as you can about the Dx, all the treatment options, diets, supplements, and medication available. Know exactly what it is for, and what the possible side effects are. Research the side effects and see if they will go away with time, or can lessen with a dose adjustment. Know your stuff.

Good luck.

Cyndi
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Old 04-06-05, 12:12 PM
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Cyndi,

Thanks allot. Lately her tics are barely noticable, that is good, but I am sure they will come back.

PP
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Old 07-11-05, 09:48 PM
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I've also heard of body rocking within people with TS...I've read this on the net and several Touretter's I've spoken to have said that they rock as well...it seems that rocking is the hidden symptom of TS??!!
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Old 03-01-09, 07:15 PM
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Re: The Tics of Tourette's Often Go Undiagnosed

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Originally Posted by aularian View Post
My friends tell me i'm being stupid and that theres nothing wrong with me, yet strangers comment on my tics all the time
I completely know what u mean! I have checked the symptoms lists on both these forums and also on tourettes websites and i apply to almost half of the 'tic' list and yet whenever i mention the possibility of having tourettes to my family or my friends they think im being stupid even thought my parents are always making fun of me because of my vocal tic's, i wish i could just get diagnosed secretly or something!
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Old 05-25-09, 07:21 PM
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Re: The Tics of Tourette's Often Go Undiagnosed

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Originally Posted by Crazygirl79 View Post
I've also heard of body rocking within people with TS...I've read this on the net and several Touretter's I've spoken to have said that they rock as well...it seems that rocking is the hidden symptom of TS??!!
I rock a whole lot. It's one of the reasons I prefer standing to sitting because I get the urge to rock so often. I haven't been officially diagnosed with TS, but I've strongly felt for years that I have it. I have been dx'd with ADHD. My tics have been really bad recently. I just suffered a very bad loss. Someone I loved like crazy died unexpectedly and I have been tic'ing more than I have in years.
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Old 08-26-12, 08:37 PM
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Re: The Tics of Tourette's Often Go Undiagnosed

I have recently been diagnosed with adhd and have had undiagnosed tics which i don't know whether it is Tourettes or not. I have learnt to control it in public places but it automatically occurs when i am alone or anxious excited or emotional but again I can control it in public the tics have improved now I am on ritalin but not sure if it is Tourettes or not. I have frequent tics everyday for as long as i can remember. I used to have the urge to rock back and forth too and still do sometimes but that has improved on meds
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Old 08-26-12, 11:38 PM
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Re: The Tics of Tourette's Often Go Undiagnosed

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Originally Posted by radiohead View Post
I have recently been diagnosed with adhd and have had undiagnosed tics which i don't know whether it is Tourettes or not. I have learnt to control it in public places but it automatically occurs when i am alone or anxious excited or emotional but again I can control it in public the tics have improved now I am on ritalin but not sure if it is Tourettes or not. I have frequent tics everyday for as long as i can remember. I used to have the urge to rock back and forth too and still do sometimes but that has improved on meds
Do you have vocal and physical tics?


The rocking and exited ones kind of sound like self-stimulatory behavior.
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Old 08-27-12, 08:10 AM
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Re: The Tics of Tourette's Often Go Undiagnosed

No vocal tics some times say stuff out loud to myself that i am thinkin just comes out but no regular vocal tic as such
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