From Professor Chaudhuri
Professor K Ray Chaudhuri,
Co-director National Parkinson Foundation Centre of Excellence
Lead Neuroscience Research and Development Strategy Group
Kings College/University Hospital Lewisham
Kings College and Institute of Psychiatry,
London, UK
A new gene has now been described for periodic limb movements (PLM), (leg jerks that are often associated with RLS) and is known as PTPRD although the precise function of this is unknown. The discovery of now four genes for RLS is a slap in the face of people who have ridiculed and suggested RLS is a “made up disease”.
A new study has revealed the depressing fact that in the UK, many patients diagnosed with RLS are being given sleeping tablets or quinine for treatment. This is unacceptable as RLS is entirely treatable, and some sleeping tablets make RLS worse. RLS often presents with insomnia (difficulty in sleeping) and if you have this and your GP suggests a sleeping tablet, make sure you ask about RLS first.
Rotigotine skin patch is a new form of dopamine agonist treatment and this drug, delivered through a patch which is worn for 24 hrs, is a new development in the treatment of RLS. The current data suggest that the risk of augmentation is as low as 1.5% with the patch. Augmentation occurs after an initial period of good response to drugs in RLS and is characterised by earlier or daytime occurrence of symptoms, falling response to drugs, involvement of upper limbs or chin and a quick onset of symptoms at rest. Treatment with levodopa only produces the highest rate of augmentation (about 70-80%). The patch should now be available for treatment of RLS across England.
Finally, I have to end with a sad note. Professor W Henning, a well known specialist in RLS based in New York, passed away unexpectedly in Sep 2008. He was a prime mover in the field of RLS and respected all around the world.
Questions and Answers
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On the air
Questions, Questions - BBC Radio 4
6th November 2008
Stewart Henderson of Radio 4 interviewed Professor K. Ray Chaudhuri on the subject of Restless Legs Syndrome:
Henderson: We perhaps know someone who finds it difficult to keep their legs still when, say, watching television or having a quiet drink in the pub, but when does nervous fidgeting become a definable medical condition? The term “Restless Legs Syndrome” was first used by Karl Axel Ekbom, a Swedish neurologist, in 1944. However, the first description of it appears to date back to the 17th Century. A physician to Charles II, Thomas Willis, was treating patients with reflex actions and noticed that: "Some, when being in bed, presently in the legs had leaping and contractions of the tendons, and so great a restlessness that they are no more able to sleep."
Chaudhuri: I think it is a very important distinction that needs to be made. Often people have the problem of the legs being fidgety and that's simply because the legs become achey and suffer discomfort when you put them in one position for a while and this goes by the name akathisia which means restlessness but that is quite different to the other condition which is known as Restless Legs Syndrome which involves a specific condition where people have restlessness in the leg, an urge to move their legs only when they're resting and typically occurring in the evening or at night. So the two conditions are quite different.
Henderson: Before we come to Restless Legs then, why is it that some people fidget their legs; it's referred to loosely as nervous energy?
Chaudhuri: The underlying cause of restlessness or this restless energy is unclear. We know that in some conditions that it can occur for instance if some people are taking medications in relation to a mental health disorders, that can sometimes cause this as a side effect, and in some children for instance attention deficit hyperactivity disorder - ADHD - or growing pains, all these conditions might manifest itself as restless energy, but in many others it just happens, there is no defined neurological or psychiatric cause for it.
Henderson: Turning to Retless Legs Syndrome, what are people experiencing when it strikes?
Chaudhuri: The commonest problem is lack of sleep. These patients do not sleep sometimes for months and years and they are not taken seriously when they go to their doctors or to their other health care professionals and they describe their lack of sleep; usually it is thought to be due to insomnia or to some sort of problem such as depression so they are given anti-depressants or sleeping pills, and some of it makes the Restless Legs Syndrome worse, so the typical problem that these patients experience is lack of sleep. But the other major problem they experience is some very horrible and uncomfortable feeling in the legs, and that's described in various ways, one of them is "Coca Cola bubbling though my veins" is the description from one of our patients, or creepy crawlies in the legs, or severe pain in the legs could be a manifestation.
Henderson: And why isn't it recognised as a serious condition?
Chaudhuri: It is not recognised as a serious condition for two reasons, one is the name of the condition implies a slightly trivial nature of the illness perhaps, you know restless legs, fidgety legs, if you don't accept the two are different, and the second is general under-recognition of this condition particularly in the UK compared to the rest of the European countries.
Henderson: Is there a specific time or are there particular conditions when it manifests itself?
Chaudhuri: Restless Legs Syndrome is a condition that can either come on its own at any time at any age, or in some people, particularly women, where it is very common, it can unmask itself during pregnancy. In the last half of the trimester of the pregnancy patients might develop Restless Legs Syndrome, and often after the delivery of the child the RLS disappears, but in some it remains. Also sometimes if people have problems with thyroid gland, diabetes, nervous problems such as inflammation of the nerves, that also can result in Restless Legs Syndrome.
Henderson: What, then, would you suggest to a person who seems to be showing symptoms of Restless Legs Syndrome; is the treatment available?
Chaudhuri: The treatments are available, they are licenced, and they have gone through international clinical trials and they are very robust. Treatment can be issued by the general practitioner themselves, it doesn't need to be referred to secondary care, but again, should the need arise, that can also be arranged.
Henderson: K Ray Chaudhuri, thank you very much.
