Charcot's Folly
Jean Martin Charcot, director of l'Hospital de la Salptriere was
on a mission in the 1880's...a mission to describe new medical conditions.
When his student Georges Gilles de la Tourette presented him with maladie des
tics, Charcot leapt upon it. Thus Tourette syndrome was
"discovered".
The question I feel has to be asked is "was that really a good idea?"
Don't get me wrong. I'm not so idealistic that I believe this condition would not exist if it had not been named in 1885. The problem is with considering Tourette syndrome a discreet syndrome.
Researchers have recently found that dyslexia, a common condition where the afflicted has trouble reading and writing, is not actually one disease. Dyslexia is a description of symptoms that can be caused by 7 different factors.
Since hearing this I have considered the strange picture presented by Tourette syndrome and begun to wonder, could Tourette syndrome simply be an incorrect grouping of symptoms rather than a single syndrome?
I've had a couple of doctors who are certain of this. I have heard many times over the years that "there is no such thing as a typical case of Tourette syndrome". They've never explained why this is, nor have they backed it up with any evidence.
That's what I shall attempt to do on this page. And it wouldn't be me if I didn't start with the genetics of the thing.
It is repeated ad nauseum on this site that the trigger gene for Tourette syndrome (GTS) is also the trigger gene for Obsessive compulsive disorder and Chronic tic disorder. This is quoting directly from the OMIM website. However Dr Comings, an expert on Tourette's in the 1990's, also believed that Transient tic disorder and any propensity for any other tic condition are also triggered by this GTS gene. It is currently accepted that these conditions are discreet. That is there is a specific point where A condition is no longer Chronic tic disorder and it becomes Tourette's. Something like the diagram below:
To me however, the similarities of these conditions and the fact they are controlled by the same gene suggests a more continuous spectrum:
Although this is a highly unsophisticated diagram, it probably makes my point more than a complex one would. Rather than being a continuous and even spectrum, the tic distribution is heavy around the Chronic Tic area (that is, the majority of cases in this spectrum appear to be Chronic tic). There are areas where it is easy to diagnose someone with a particular condition, and others where the distinction is so blurry that it is difficult to settle on one.
For example, a person may have severe coprolalia and numerous motor tics. Their experience started early in life and has occurred continuously for 7 years. This person would be right up the far left of the spectrum...an obvious case of Tourette's.
Another person may have vocal tics only. These tics also started at an early age and were severe for a period of five months. They have, since then, occasionally had tiny and unobtrusive facial tics at times of great stress. Diagnostically, they would probably be said to have Transient Tic disorder. The duration of the socially detrimental tics was less than six months and has not reoccurred. But the next edition of DSM will state that tics need not interfere with functioning or even be upsetting to the person for a diagnosis to be made. Because some measure of tic has occurred over many years since the severe bout disappeared the person could then be said to have Chronic tic syndrome. This does not, however, take into account that his severe bout of tics was vocal while his current and ongoing tics are motor. The diagnosis of Chronic Tic specifies that only motor OR only vocal tics must be present, so this person must be upgraded to diagnosis of Tourette syndrome.
Now these two cases are so vastly different it is very hard to believe that they have the same illness, but that's how the current system works. I personally think there are some huge kinks to be ironed out.
OCD appears to stretch the entire length of the tic spectrum. It appears to be much more common around the more severe Tourette syndrome end (1 in 2 people) and less common at the Transient Tic end (close to 1 in 50 people).
How does this happen? I can think of only one explanation.
We currently see tics and OCD as two completely separate entities:
But...
I bet you could see that coming!
This time, however, the severity does not decrease from left to right. The most extreme form of these conditions is directly in the middle where the two overlap. This would explain why a more severe tic disorder goes hand in hand with a higher risk of OCD. It also explains how some people are only affected by OCD - they are just at the far end of the spectrum. It is just another was of expressing the GTS gene.
So was it really a good idea or not?
To return to my original question, the honest answer is that I don't know whether classifying Tourette's syndrome as a discrete syndrome was a good idea or not.
I can see the advantages:
If, when 12, my doctor turned to me and said "You have a condition somewhere in the GTS gene spectrum." I probably wouldn't be satisfied. If I then, as I have, went on to find out more I would have been disappointed that the diagnosis was so general and that so many people with "my condition" didn't experience anything even remotely like what I was going through. When searching for support groups it is much better to find other Touretters than to start a discussion about how much I hate vocal tics with a motor only Chronic Ticcer who has no clue what I'm on about. Even if it is a bit inexact a diagnosis, it makes people feel better about themselves to have an explanation and almost a plan for these movements.
On the negative side however:
When you are finally beginning to accept yourself and your Tourette's syndrome and you visit a Doctor who states firmly "You don't have textbook Tourette's therefore your problem is anxiety/depression/oral fixation/your mother toilet trained you too early." it can be pretty nasty. They way I've learned to cope with this is calmly say "yes, yes, of course Doctor" and then leave and find someone else who isn't stupid. If the whole OCD/Tic spectrum thing was classed as one disorder this would never be a problem. I'm in there somewhere, I just drift a bit over time. This drifting also means that I do actually have quite a bit in common with people in the other parts of the spectrum. Also, because this is genetic, I am related to others in other parts of this spectrum. If you realise that Tourette's is really part of a family it's much easier to explain to a large percentage of the population. 1 in 50 people will experience a tic spectrum disorder in their lifetime. The odds are that the person you're talking to will know someone who has/had one of these conditions. It makes the family of kindred spirits much larger.
The question I feel has to be asked is "was that really a good idea?"
Don't get me wrong. I'm not so idealistic that I believe this condition would not exist if it had not been named in 1885. The problem is with considering Tourette syndrome a discreet syndrome.
Researchers have recently found that dyslexia, a common condition where the afflicted has trouble reading and writing, is not actually one disease. Dyslexia is a description of symptoms that can be caused by 7 different factors.
Since hearing this I have considered the strange picture presented by Tourette syndrome and begun to wonder, could Tourette syndrome simply be an incorrect grouping of symptoms rather than a single syndrome?
I've had a couple of doctors who are certain of this. I have heard many times over the years that "there is no such thing as a typical case of Tourette syndrome". They've never explained why this is, nor have they backed it up with any evidence.
That's what I shall attempt to do on this page. And it wouldn't be me if I didn't start with the genetics of the thing.
It is repeated ad nauseum on this site that the trigger gene for Tourette syndrome (GTS) is also the trigger gene for Obsessive compulsive disorder and Chronic tic disorder. This is quoting directly from the OMIM website. However Dr Comings, an expert on Tourette's in the 1990's, also believed that Transient tic disorder and any propensity for any other tic condition are also triggered by this GTS gene. It is currently accepted that these conditions are discreet. That is there is a specific point where A condition is no longer Chronic tic disorder and it becomes Tourette's. Something like the diagram below:
To me however, the similarities of these conditions and the fact they are controlled by the same gene suggests a more continuous spectrum:
Although this is a highly unsophisticated diagram, it probably makes my point more than a complex one would. Rather than being a continuous and even spectrum, the tic distribution is heavy around the Chronic Tic area (that is, the majority of cases in this spectrum appear to be Chronic tic). There are areas where it is easy to diagnose someone with a particular condition, and others where the distinction is so blurry that it is difficult to settle on one.
For example, a person may have severe coprolalia and numerous motor tics. Their experience started early in life and has occurred continuously for 7 years. This person would be right up the far left of the spectrum...an obvious case of Tourette's.
Another person may have vocal tics only. These tics also started at an early age and were severe for a period of five months. They have, since then, occasionally had tiny and unobtrusive facial tics at times of great stress. Diagnostically, they would probably be said to have Transient Tic disorder. The duration of the socially detrimental tics was less than six months and has not reoccurred. But the next edition of DSM will state that tics need not interfere with functioning or even be upsetting to the person for a diagnosis to be made. Because some measure of tic has occurred over many years since the severe bout disappeared the person could then be said to have Chronic tic syndrome. This does not, however, take into account that his severe bout of tics was vocal while his current and ongoing tics are motor. The diagnosis of Chronic Tic specifies that only motor OR only vocal tics must be present, so this person must be upgraded to diagnosis of Tourette syndrome.
Now these two cases are so vastly different it is very hard to believe that they have the same illness, but that's how the current system works. I personally think there are some huge kinks to be ironed out.
What about OCD?
I have, quite significantly, left Obsessive Compulsive Disorder off of this spectrum. That is because it would probably look like this:
OCD appears to stretch the entire length of the tic spectrum. It appears to be much more common around the more severe Tourette syndrome end (1 in 2 people) and less common at the Transient Tic end (close to 1 in 50 people).
How does this happen? I can think of only one explanation.
We currently see tics and OCD as two completely separate entities:
But...
I bet you could see that coming!
This time, however, the severity does not decrease from left to right. The most extreme form of these conditions is directly in the middle where the two overlap. This would explain why a more severe tic disorder goes hand in hand with a higher risk of OCD. It also explains how some people are only affected by OCD - they are just at the far end of the spectrum. It is just another was of expressing the GTS gene.
So was it really a good idea or not?
To return to my original question, the honest answer is that I don't know whether classifying Tourette's syndrome as a discrete syndrome was a good idea or not.
I can see the advantages:
If, when 12, my doctor turned to me and said "You have a condition somewhere in the GTS gene spectrum." I probably wouldn't be satisfied. If I then, as I have, went on to find out more I would have been disappointed that the diagnosis was so general and that so many people with "my condition" didn't experience anything even remotely like what I was going through. When searching for support groups it is much better to find other Touretters than to start a discussion about how much I hate vocal tics with a motor only Chronic Ticcer who has no clue what I'm on about. Even if it is a bit inexact a diagnosis, it makes people feel better about themselves to have an explanation and almost a plan for these movements.
On the negative side however:
When you are finally beginning to accept yourself and your Tourette's syndrome and you visit a Doctor who states firmly "You don't have textbook Tourette's therefore your problem is anxiety/depression/oral fixation/your mother toilet trained you too early." it can be pretty nasty. They way I've learned to cope with this is calmly say "yes, yes, of course Doctor" and then leave and find someone else who isn't stupid. If the whole OCD/Tic spectrum thing was classed as one disorder this would never be a problem. I'm in there somewhere, I just drift a bit over time. This drifting also means that I do actually have quite a bit in common with people in the other parts of the spectrum. Also, because this is genetic, I am related to others in other parts of this spectrum. If you realise that Tourette's is really part of a family it's much easier to explain to a large percentage of the population. 1 in 50 people will experience a tic spectrum disorder in their lifetime. The odds are that the person you're talking to will know someone who has/had one of these conditions. It makes the family of kindred spirits much larger.