More MS news articles for Nov 2001

Multiple sclerosis,,600-2001380788,00.html

Dr Thomas Stuttaford, The Times medical expert, answers your questions on multiple sclerosis.

Dr Stuttaford’s replies cannot apply to individual cases and should be taken in a general context. Please consult your GP if you suffer from any health or special conditions.

Q - My 21-year-old granddaughter has been diagnosed with optic neuritis.  She has been told that this condition generally leads to multiple sclerosis (MS), although she has no other symptoms at present.

a)      Could this be a "one-off" attack?
b)      Can the nerve regenerate itself?
c)      Is the development of MS inevitable at some stage in her life?
d)      Is there anything she could do now to help prevent progression of the disease?

Mrs M Slamer (address withheld)

A - It is true that a great many cases of MS start with symptoms which are derived from optic neuritis – but there are many other causes of optic neuritis.  I don’t, of course, know your granddaughter so I can’t comment on her case, but I would assume that she has had MRI scans done and that there is some other evidence that “the condition generally leads to MS”.

I many cases in which no other evidence of MS is found, and there is no other obvious cause such as temporal arteritis, exposure to chemicals, allergy to bee stings, etc, the cause of the optic neuritis is never discovered.

In all cases of multiple sclerosis an important feature of the treatment is for the patient to have a relaxing life.  They should avoid either extreme emotional or physical stress, they shouldn’t be exposed to extremes of temperature – in particular heat – and so far as possible they should avoid fevers. Heat is a very common cause of relapse in MS and holidays should therefore be taken in temperate zones; there shouldn’t be any baking on Mediterranean beaches.

Some people swear by diets, but trials have proved rather disappointing.

In most cases of MS there is initially a relaxing and remitting pattern to the disease – it waxes and wanes – and there is a very considerable degree of repair of the myelin sheath in between relapses.  If the optic neuritis were a result of any other disease process, this would not necessarily be so.

Q - The medical profession as a rule doesn't recommend nutritional therapy, yet in my own experience as a member of an active MS diet group ( which follow strict recommendations, it is extremely beneficial  and more effective than drugs.   Do you agree it's about time that dietary changes were considered as an economical, effective way of treating MS?

Mrs Anne Barrett (address withheld)

I am delighted to hear that you have found the diet helpful in your case.  Research on some of the popular diets used to treat MS over the years has proved rather disappointing, but if you have found one that helps you and your friends with the disease, that’s excellent – keep taking it.  On the other hand, it is important not to renounce the standard treatments, the beta interferons if you can get them, or Copaxone glatiramer acetate, which are of proven value.  The advent of these drugs, which modify the disease process, has rather taken the spotlight off the use of steroids.   For many years steroids were the lynchpin of treatment and these too shouldn’t be disregarded.

In this country we have been very tardy in our use of beta interferons and Copaxone, but in other parts of the world, they are more extensively used and have proved very valuable.

Q - I understand that MS sufferers can be affected in different ways, for example not all of them end up in wheelchairs. Can you put some approximate figures against the different levels of impairment, please?

John Smith (address withheld)

A - MS is a very variable disease.  Thirty-odd years ago I frequently used to see a very prominent bishop, and I met him each year on numerous occasions.  One day I was walking through his darkened study on the way to see one of his staff when a voice from the sofa  said: "could you turn the light on for me, Tommy".  I turned it on and asked him why he hadn’t done it himself, and he explained that he had had his first attack of multiple sclerosis while a student, but it had run such a long and protracted course that he had been able to serve in the navy during the war and had been an explorer.  The attacks, when they came, were quite paralysing but within two or three weeks he was back on his feet and none of his flock had found out why he was away.  This man had had the disease for about 40 years when I knew him, and he went on to live a normal lifespan.

In general we divide MS into four types.

a) Relapsing-remitting MS - 40 per cent.  These patients have periods of complete, or near complete, remission and are like my bishop.

b) The second type is secondary-progressive.  These are the people who have relapsing-remitting MS but after a great number of years begin a slow but steady decline as a result of their neurological symptoms.  Forty per cent of people with MS can be included in this group.

c) The next group are those with primary-progressive MS.  These people share increasing symptoms from the start and there is no evidence of any remission from the progress of the disease.  Only ten per cent of patients follow this course.

d) The last type of MS is benign multiple sclerosis.  These patients have a few, usually sensory, symptoms and then have a complete remission of all symptoms very often for 10 to 15 years, or even longer.  The usual accepted figure for people with this form is 10 per cent but some authorities would put it as high as 20 per cent.

It is a characteristic of MS that it does run different courses, and perhaps the manifestation of this is that the exact percentages included in the four different presentations of it and pattern of behaviour of the disease varies according to the expert discussing the disease.

The average duration of life after onset of symptoms is thought to be about 30 years, 15 per cent die within ten years and one third within 15 years. It shouldn't be forgotten that in 20 per cent of patients there is no appreciable disability after 10 to 15 years.

Q - My wife was diagnosed with MS about 20 months ago and the diagnosis was "mildly progressive". Is this basically the same disease as other variants? Typically, what is the time lag before the condition becomes more serious? My wife feels that she has a time bomb waiting to explode.

We met an American research professor a couple of years ago, and he advised that there were successful trials in reattaching myelin to rats. Are you aware if this research has been progressed to humans? He was very confidant that a cure would be found within five years.  Your advice would be appreciated.

Frank Tiller, Chigwell

A - I suppose that any patient who is labelled as being mildly progressive would be considered to have the primary progressive type of MS, but one that is running a very slow course and it not causing at the moment much in the way of disability.  I suspect that it is the same disease as we have discussed in answer to other questions.

MS is usually, but not always, a very slowly progressive disease with a course running into a great many years.  It is impossible to generalise, but if one tries to generalise at all it would be to say that it is older men who develop their first symptoms in middle age or later who have the most rapid form of the trouble.

I think that the American research professor was indeed a very optimistic and confident man to predict a cure for MS within five years.  Certainly there is a huge amount of research into the myelin sheath in MS, but I wasn’t aware that there was any way of reattaching it to the nerves.  As you know, the myelin is similar to the insulation around an electric wire and if the myelin breaks up as a result of inflammation, the nerve doesn’t work as the impulses travelling along it are interrupted.  The usual teaching is that the nerve fibre damage can be irreversible so that unless the myelin sheath could be reattached fairly early, there would be some residual symptoms.

I think that the disease modifying drugs such as beta interferon and Copaxone do represent an enormous advance in the treatment of some forms of MS – the greatest advance that I have seen in my lifetime.  There is always a hope that we will understand the reasons why the myelin sheath is attacked by the body’s immune system and will find a way of overcoming this, but I don’t think there’s any guarantee that it will be within the next five years.

Q - My daughter, aged 38, has the benign form of MS. This was diagnosed 11 years ago and since then, she has had very few troublesome symptoms; the main symptom, extreme fatigue, can occur after a very busy time or extra stress, and an early night usually helps. I have heard that hyperbaric oxygen treatment is beneficial in this type of MS. Could you comment please?

Lesley Loddington, Poulton-le-Fylde, Lancs

A - I am delighted that you have stressed the importance of lifestyle in the treatment of MS, and the need to avoid extreme fatigue.  Violent physical exercise, which exhausts the body, should be avoided.  Your daughter must avoid the temptation to go on 20-mile hikes, climb mountains or swim across bays.  Six or seven hours’ sleep is also important, and she must be careful not to become overheated.

Hyperbaric oxygen treatment is a treatment in which the whole body is exposed to oxygen at three times atmospheric pressure.  These pressure chambers are used to treat such problems as the bends in divers, or in heart or lung disorders.  About 20 years ago, I first heard of hyperbaric oxygen being used to treat multiple sclerosis because my then editor, while on a skiing holiday, befriended one of his fellow skiers who suddenly developed symptoms of MS.  He arranged for her to have hyperbaric oxygen treatment and she did very well.  For a time he became a great enthusiast for it.  But it was hard to find any convincing evidence that it was helpful and that the patients who did get better wouldn’t have gone in for remission anyway.

I can’t think of any good reason why a young woman shouldn’t try it to see if it helps her, but it would be worthwhile asking the Multiple Sclerosis Society (0207 371 8000) or call the national helpline on 0808 800 8000.

Q - With reference to your article on MS (top left), are you able to throw light on the current research now being undertaken both in the UK and worldwide on this possibly auto-immune disease? What is the anticipated rate of progress, and are there any genuine signs of success? How can I keep fully updated?

Edward Boroughs, Soberton

A - I think that the greatest sign of success in the treatment of MS is the development of the beta interferons and Copaxone.  A huge amount of research is being undertaken into MS and, of course, into other auto-immune and demyelinating diseases.  When the answer to this terrible disease will be found nobody knows, but it will be sooner or later. 

Q - Your recent cogent article goes some way to explaining the Multiple Sclerosis Society's almost total preoccupation with remitting-relapsing MS. Until such time as a cure (or at least a palliative treatment) is found for progressive MS, could I ask for your suggestions on how best to cope with a tremor in one hand? For me, this is getting so acute that I can no longer use a pen or a knife and fork. I am beginning to find this even more debilitating than my wheelchair, so any suggestions you may have would be more than welcome.

Mark Brown, London

A - I am very sorry to hear about the problems you have in controlling fine movements in one hand because of the tremor.   I am not at all surprised that you find the tremor more disabling and a greater interference to your life than the weakness in your lower limbs which has led the wheelchair.

I assume that you are attending a neurologist and have tried the usual treatments.  You will be aware that cannabis extracts are recommended by some doctors to treat disabilities just such as yours.  I am opposed to the recreational use of cannabis because of its adverse effects, but am very much in favour of the research work now being carried out on it for medicinal purposes and hope these will be successful in cases such as yours.

Q - My 30-year old niece has had her first attack of MS at the age of 22. This was a severe attack which required hospitalisation for two weeks. The main feature, apart from tingling and numbness in the body, was excessive salivation. The doctors were unable to confirm MS at that stage. Even later through scanning of the brain and spine there are no expected signs of myelin destruction. There is still a question mark hanging over her condition.

She is being treated by a German doctor who favours alternative treatment, such as taking Wobenzym. Taking these enzymes seems, so far, to control the disease. If she stops or reduces the tablets symptoms, such as difficulty walking, return. What if any, are the alternative treatments in the UK?

Anita Watts, Brussels, Belgium

A - The diagnosis of MS can be much more difficult than is supposed.   There is no 100 per cent certain way of making the diagnosis although the MRI scanner has made diagnosis much more certain than it used to be.  I am not surprised therefore, without any MRI evidence of the disease, that a question mark still hangs over her condition.

In general, German doctors do tend to favour alternative therapies more than we do in the UK. However, as we can’t be certain of the diagnosis we can’t either be certain what effects the enzyme she is taking have on the underlying condition.

In all cases, the essential first step is to have a firm diagnosis and then the question of treatment can be discussed.  Every good wish.

Q - In the new trial of beta interferon (if it goes ahead), will treatment be available to all R/R patients in the UK, or will people be treated differently, depending on Scottish or English residency?

Hana Rosemount, Glasgow

A - There are differences between English and Welsh, and Scottish National Health Service treatments and you have raised an important point about the trial involving patients with relapsing-remitting multiple sclerosis.  I would be surprised if people were treated differently north of the border and if they were not incorporated into the trial, but I would suggest that you either ring up the national helpline (0808 800 8000), or the MS Society of Scotland (0131 472 4106) for the definitive answer.  Good luck with the beta interferon.  I have had patients whose life has been revolutionised by it.

Q - In answer to Anne Barrett's question you say that research into diet has been disappointing, but isn't it true that in effect there have been no major research studies undertaken into diet and it's efficacy in treating MS? This is mainly due to the lack of drug company sponsorship.

Shouldn't the Goverment step in to fund research which will help prove, once and for all, whether diet can be an effective alternative to expensive drugs?

Brian Pile, Leicester

A - There was widespread research into one particular diet, much advocated some years ago, and despite the claims made for it there is no evidence that it helped. In general, I would agree with you that there hasn't been a careful analysis of all the many diets suggested from time to time to treat MS, nor is there any convincing evidence that they do work.

Dietary supplements of linoleic acid have also, in the past, been claimed to reduce the severity of relapses but the trials have also shown that this is not effective. Others have claimed that a low animal fat diet is helpful, but there isn't any convincing trial which show the validity of these claims.

It must be remembered that with any disease that has such a variable outcome, and which may run so many different courses with long periods of remission, it is very difficult to conduct trials.
Copyright 2001 Times Newspapers Ltd