Tuesday, May 03, 2011

some thoughts on the diagnostic conundrum in TS and the psychiatric 'splitting' compulsion

People with Tourette Syndrome often have rapid busy thoughts and movements and a restless urge to get up and do things (sometimes referred to as the 'dopamine drive'). At the end of a day they can be exhausted but sleep can be elusive due to excessive thoughts.

It doesn't take a great leap of imagination to understand that if you have TS you will almost certainly have some 'attention deficit' and that you are also likely to be rather active. Many doctors insist that these 'symptoms' are 'disorders' in themselves and attach another acronym to a child's diagnosis (e.g. ADHD or ADD). If you experience low mood, and evidence suggests that in TS, CNS levels of the neuro-transmitter serotonin are lower than normal, then you are labelled with clinical depression too. Many people with TS, doctors and researchers have  noted that the obssessive and compulsive behaviours (OCB), or aspects, of TS, frequently differ in pattern from those that are characteristic of classic OCD and are mostly intrinsic and indeed characteristic of TS. However OCD is very often seen as a separate co-morbidity with TS, adding yet another disorder to a patient's medical diagnosis. Individuals with TS can often end up with an impressive collection of co-morbid disorders many of which are considered to psychiatric disorders. These will usually be treated using specific medication regimes that include a cocktail of drug therapies (often progressively expanding) appropriate to each perceived disorder. Additionally these conditions and their treatments will remain on their medical record and so further bias any subsequent medical evaluation as they suggest a history of psychiatric ill health that necessitated treatment. 

There are other physiological aspects of TS such as increased urine-flow which doctors usually put down to drinking too much, diabetes insipidus or renal problems. 

Doctors don't always know best (I've seen this from the inside too and have heard some absurd and purely subjective ideas about TS and it's treatment) - it's time for a more scientific (e.g. evidence based) and rationalised approach to the definition of TS and it's diagnosis and a move away from the 'alphabet soup' approach of traditional psychiatry. Remember symptoms are indicative of an underlying disorder for which a credible pathophysiology must exist. You cannot just describe symptoms and assume you've defined a disorder. It's like saying that "Oh you have runny nose syndrome" rather than that you have the symptoms of: a runny nose, sneezing and fever because you have a cold which is caused by a rhinovirus. A single underlying disorder such as Tourette Syndrome may give rise to a diversity of symptoms (what the patient experiences themselves) and signs (what the professional is looking for or able to detect through clinical examination. Many disorders or illnesses share symptoms/signs but each is defined by the presence of several or more in a specific association/pattern. This is evident in the fact that people with TS may exhibit reduced attention and concentration, an expected consequence of the normal symptoms of the disorder. People without TS but with autism or 'ADHD' may also share these problems but for different reasons. 

Even what is currently known of the underlying biochemistry, physiology and neuroanatomy of TS goes a long way to explaining many of the 'symptoms' that are experienced and suggests they are relatively consistent and are logically part of a single disorder. However many doctors find that looking at TS (and autism) from a more neurophysiological or organic perspective quite controversial and against the established clinical perspective they have become used to in which  psychological or socio-environmental influences are considered of importance (neurologists seem to have considerable less difficulty in this respect than psychiatrists/clinical psychologists). This is often reflected in their emphasis on taking a psychiatric history with little emphasis on the neurological problems of motor/impulse control, sensory processing, sleep interruption, physical fatigue and physiological aspects such as increased urine flow, joint inflammation, muscle-pain and activities of daily living.

That many aspects (symptoms) of TS normally reported by individuals to their doctors, are not seen as being associated with the disorder (medical training and the available standard textbooks are partly responsible) presents a very real problem for 'patients' as doctors often find a need to investigate these separate issues in isolation from TS and often the results of clinical investigation and diagnostic deduction tend to be highly inappropriate to bringing about a logical and cohesive explanation and management approach that is satisfactory to the patient or their relatives. As the approach to TS has become more psychiatric, some of the neurodevelopmental and physiological issues have been neglected and not recognised or put down to other causes. 

There are some published references to polyuria in TS (high urine output). When I have spoken to people about this they have often confirmed that it is something they are familiar with. Psychiatrists have unfortunately usually put it down to excess drinking (polydipsia) - a psychological cause. The evidence points to any increase in fluid intake being compensatory to losses through increased urine output and dehydration. Levels of the hormone vasopressin (or ADH) are implicated and also dopamine.

The spectrum nature of TS must be always considered in diagnosis and management. Evidence suggests that different individuals have subtle differences within the areas of the brain that are affected in TS and so differ in the way in which their TS symptoms present. Athough more focused clinical research is clearly desirable, current knowledge (which is actually quite voluminous and has accumulated over more than a century despite popular belief) needs to be properly synthesised as at the moment people are often being left to speculate and many doctors are, unfortunately, woefully behind on what is known.