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Multiple sclerosis is the commonest disabling disease in young adults in the United Kingdom. The condition can however affect people at any age and perhaps as many as 1 in 10 people will develop this disease after the age of fifty. As far as we know, there are about 85,000 fellow sufferers in the UK which means that each general practitioner will have between two and four patients under their care. The cause of the disease remains unknown and there are no cures. The downturn or a relapse can strike at any time and this adds a malignant uncertainty to the disease as so many of you already know.
In 1978, Dr Ray Brettle and I working at the Hammersmith Hospital first discovered that you could treat inflammatory diseases of the nervous system. At that time, we undertook plasma exchange in a young woman who had inflammatory disease of her nervous system called the Guillain Barre Syndrome. It was shown to be effective by scientific study and the rest as they say is history.
Why should this event in 1978 have such significant for people who have multiple sclerosis? The answer is simple. Dr Brettle and I were treating a condition in the peripheral part of the nervous system caused by demyelination of the peripheral nerves. Multiple sclerosis is a disease that causes demyelination of the central part of the nervous system. Having shown that it is possible to treat one area of the nervous system effectively, surely it had to open the door for treatments to be found for the much more common condition of multiple sclerosis.
It was with enormous excitement that I watched through the 1990s as study after study showed that not just the Beta Interferons but also the therapy called Copolymer I could modify M.S. These agents reduced the number of relapses and diminished the amount of disease activity that could be seen on MRI brain scans. The world heralded a new era of treatment. Not quite! The United Kingdom decided to watch as the rest of the world moved on. Very little money has been made available to treat people who have multiple sclerosis, even those who fulfil all the necessary criteria to receive the therapy. This by itself is bad enough but there are other factors to consider. With any new treatment, there is a need for doctors to learn how best to use the medication. Different people react in different ways. Alternative combinations of therapy may prove more effective and it is often by this trial and error, almost chance basis that new developments take place. We are being denied that experience in the United Kingdom at the moment and it will take years for us to catch up with our western European and North American colleagues. When the Czech Republic presents the results of using multiple drug regimes in multiple sclerosis, then you know something is wrong with your own healthcare system.
NICE after several years have concluded that Beta-Interferon is not cost effective. I do not know if they have taken into account the value added benefit of the specialist nurse programme that has been generated by the pharmaceutical industry. They also need to consider that "not cost effective" equates to "not being worth it". This fits in rather sadly with what happens all too often to people and their families when facing significant disability. Some individuals choose to hide away because it is just too difficult to get to public places because of failure of proper access. There are often poor toilet facilities and even a single kerb can be an impossible barrier to electric wheelchair use. All of us must work very hard to reverse this apathy of society as a whole. If you come across anything anywhere that is not sensitive to the needs of the disabled, do something about it. If you don't, why should anybody else? I want to focus now however on what treatment is readily available rather than just be negative.
When there has been a recent downturn, either because of an acute relapse or an acceleration in the disease itself, then steroids may be given. There is no evidence that steroids do any harm when given in a short course. There is very little indication to give steroids for a prolonged period in multiple sclerosis though there are very occasional exceptions.
Steroids can be given either orally usually in some kind of reducing dose over about two weeks. They can also be given by intravenous drip when patients need to be admitted to hospital for either three or five days. These doses are very much higher. Out of interest, there is no absolute need for anyone to be admitted to hospital and if there was sufficient resource, then this treatment could be given in your own home or at the doctor's practice. The intravenous infusion only takes about one to two hours and it could be supervised by a specialist or community nurse. That is worth thinking about the next time you need to wait many weeks or months in order to get your intravenous steroids.
In a small number of patients, I have used intravenous gamma globulin which is a protein extracted from blood products and highly purified. This needs to be given over five days and does take many hours to infuse. There are a number of studies that show that it is beneficial particularly when people have had a series of relapses not responding to steroids. The treatment is expensive and hardly available.
There are other treatments using quite potent drug therapies taking place in other parts of the world. The results of these studies are not yet complete. It is purely a guess by me but I suspect in the future patients with multiple sclerosis will be offered a multi-drug regime to control their disease. This is likely to involve pulses of steroids, either Beta Interferon alone or in combination with Copolymer I with or without an immunosuppressive drug and gamma globulin.
Many people with MS feel that if they cannot get the primary treatments, then there is nothing else that can be done. Nothing can be further from the truth. The treatments and symptomatic control fall largely into two groups. There are the non-drug therapies and the drug therapies. I will deal first with the drug treatments that can help symptoms but I would not suggest for one moment that they are more important than the other simple measures and perhaps the opposite is true.
Stiffness in the limbs is often associated with difficulties in walking, sitting, sleeping and in fact doing more or less everything in life. It is very important with spasticity to make sure that the bowel is not constipated and that the bladder is not infected. If there is any skin irritations such as an ingrowing toenail or skin sore, then these need treating. Nutrition and hydration must be maintained to help the nervous system. If a wheelchair is in use, then the cushion must be well-fitting and comfortable and there must not be any inappropriate pressure on the wrong part of the limb. Clearly physiotherapy and occupational therapy assessment is vital.
There are three main drugs used in the management of spasticity. These are tizanadine, baclofen and dantrolene. It is vital when using these medications that the dose is increased very slowly. If too much stiffness is removed, then weakness intervenes and the side-effects also include drowsiness and fatigue. The management of spasticity is highly specialised and there are other sophisticated treatments that can be used if all these simple measures do not work. Occasionally drugs like diazepam and clonazepam are used but usually they do cause too much drowsiness but not in everyone.
Fatigue is said to be amongst the commonest symptoms of MS sufferers. Many will know that the fatigue is overwhelming not just like being a little bit tired and it prevents normal activity. Fatigue is perhaps the least well-understood symptom and I suspect gets the least sympathy. After all, you cannot see it and hence the patient must be making it up!
A medicine called amantadine which started life treating virus infections has been shown to benefit fatigue. A stimulant agent called penvin has also been tried and there is a lot of interest at the moment in a new medication called modafanil. This latest drug, which is used in the treatment of a sleep disorder called narcolepsy, looks promising in its ability to help fatigue sufferers. We will not know if it is a true benefit or not for some time yet.
I tend to ask patients with fatigue to keep a diary and use the drug therapy for a month and then come off it to check that there is a definite benefit.
Depression is far more common in multiple sclerosis than is usually perceived. Many people with MS seem to cope very well with their disability. When however they are questioned closely, there is often a masked depression. I often prescribe a low dose of a tricyclic antidepressant drug in this situation. The tricyclic drugs represent one of the older groups of antidepressants. They are particularly effective in people who have MS as they can help sleep disturbance, pain and sensory symptoms as well as having effects on elevating mood and performance. Intriguingly they formed part of the so-called carry-loader regime and I have always suspected that it was this component that was in fact the significant treatment.
Pain is usually said not to be part of multiple sclerosis but that is not true. The muscle spasticity can cause pain as can common cramps. Pain can also arise from the nervous system. There can also be unpleasant sensory symptoms that are in effect a type of pain although they may be described as pins and needles or burning. Drug therapies belonging to the antidepressant and anticonvulsant group of drugs can be tried and are often helpful in alleviating symptoms.
Whenever there is pain in multiple sclerosis, it is essential to get a proper diagnosis. People who have any problem with their nervous system are more likely to get difficulties elsewhere. The neck and back can become painful for many reasons particularly if wheelchair bound. Shoulders get pulled, hips get painful and in fact any part of the musculo-skeletal system can cause increasing disability without it actually being primarily part of multiple sclerosis. Any new pain must be assessed by an interested physician and appropriate diagnosis made first before treatment.
There is still a large prize awaiting to whoever invents the first proper female incontinence device besides a catheter. How we need this invention for ladies with MS and incontinent bladder. It is not just the inability to hold on to the urine that is the problem, it is also the retention of the urine in a bladder that does not empty properly. If the bladder does not empty, then it can get infected. This in turn leads to increased illness and fatigue and many other problems. To avoid incontinence and bladder embarrassment, many people do not drink enough and this frequently leads to constipation. Constipation in turn puts pressure on the bladder and increased urinary frequency.
There are a number of drugs that can be used to assist bladder function. Likewise the technique of intermittent catheterisation has been a godsend in an otherwise godless state. There is a need for people with MS to have ready access to specialist incontinence and bladder nurse specialist advisers. They in turn need good investigation facility and a consultant urologist to undertake whatever other therapy is required.
Usually in MS, it is constipation. Meticulous attention to diet, bowel practice with regular evacuation and avoiding dehydration is essential but easier to say than do. Almost every patient I see with MS who has not seen a specialist for more than three months has constipation. Every patient who is wheelchair dependent I find is always constipated. I have already discussed all the associated problems that this generates. Most of the MS patients who say they leak faeces or have "diarrhoea" in fact are constipated. They have the condition called "overflow" where only liquid motion passes by the constipated stool.
Impotence may be one of the earliest symptoms with MS in young men. The development of Viagra has been a revolution when it works. Only in Britain is there the concept of restricting the prescriptions in case disabled people might have too much sex. Sexual advisers may well assist with technique in disabled people. Often there is just a mutual misunderstanding of the needs of the other party. This leads to frustrations that need not happen if there is open discussion. I wonder when your own doctor or specialist last discussed your sexual needs. "No sex please, we're British!" - never a truer phrase.
Epileptic seizures can complicate MS in up to 10% of sufferers. The treatment is exactly as any patient with blackouts is concerned. Some attacks however represent a very specific type of discharge of electrical activity coming from the brain stem. These episodes respond almost miraculously to carbamazepine. This drug is also incredibly effective at switching off some pain syndromes such as trigeminal neuralgia.
M.S. may present with sensory symptoms. They can also be intrusive, cause discomfort, spoil concentration and reduce sleep. This may contribute to fatigue and depression. A number of drugs can help including antidepressants and anticonvulsants. (These include dothiepin, carbamazepine and gabapentin)
There are of course a number of symptoms in MS such as loss of vision, unsteadiness of walking, inco-ordination, tremor and just frank weakness and at the moment we do not have any clear therapies. There is however usually something that can be done to assist if the problem has not been considered.
Most non-drug treatments encompass the physical therapies. A good physio and occupational therapist can make the life of an MS sufferer and their families significantly better. Good nutrition with appropriate diet and in those who are more significantly affected help with swallowing. There is no evidence that any particular diet really helps. There is some data from the past that suggests that a diet rich in sunflower oil is effective. This is much cheaper from your local supermarket than buying the much more expensive oil of evening primrose. I wish that I received a pound for the number of times I have told people to use sunflower oil on a regular basis and put the money they save for them being oil of evening primrose into a comfortable holiday. Avoiding direct sun reduces feelings of weakness, fatigue and dizziness. By all means, go to hot climates but take a wide brimmed hat and avoid hot baths. There are lots of other tips about aids and equipment which can be accessed by contact with local support groups and the M.S. Society (www.Mssociety.org)
The provision of ramps, proper access to a motor vehicle and making sure there is good access throughout the home with proper sized doorways and lift devices are all an essential part of MS management.
Overall there is a lot that can be done for people who have multiple sclerosis even though it is a relentless disease in many people. Perhaps the most important aspect of treatment in the changing of the political mine set with regard to people with neurological disability. If you have not written this week to your Member of Parliament, Chairman of your General Practitioner Primary Care Trust, Chairman of your local Health Authority and Chairman of your local acute Trust, then may I suggest that now is a good time. I used to believe that society cared. I now know that it does not. It responds effectively to demand. You do not expect others to care if you do not care yourself about others. I hope someone will prove me wrong but in a country that has only six neurologists per million people compared to Italy having seventy-one neurologists per million people, I rest my case.
If you have a symptom that is bothering you, then see your G.P. If your G.P. can't help for whatever reason, try and see a local M.S. specialist nurse or a neurologist.