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Multiple Sclerosis: friends & family experiences

What is MS?

Multiple Sclerosis (MS) is a disease affecting nerves in the brain and spinal cord, causing problems with muscle movement, balance and vision. Each nerve fibre in the brain and spinal cord is surrounded by a layer of protein called myelin, which protects the nerve and helps electrical signals from the brain travel to the rest of the body. In MS, the myelin becomes damaged. This disrupts the transfer of these nerve signals, causing a wide range of potential symptoms, such as:

• loss of vision (usually only in one eye) 

• muscle stiffness that can lead to uncontrolled muscle movements (spasticity) 

• difficulties with balance and co-ordination (known as ataxia) 

• feeling very tired during the day (fatigue)

MS is known as an autoimmune condition. This is where something goes wrong with the immune system (the body’s defence against infection) and it mistakenly attacks healthy body tissue – in this case, the myelin covering of nerves. This can cause many sections of the brain and spinal column to become damaged and hardened (sclerosis), which can disrupt the nerve signals passing through these areas. Exactly what causes the immune system to act in this way is unclear. Most experts think it is a combination of genetic and environmental factors, such as a virus or a series of viruses, lack of vitamin D and other factors.

 

Dr Richard Warner a MS Nurse Consultant talks about what happens when somebody with MS goes to see a consultant for the first time.

Dr Richard Warner a MS Nurse Consultant talks about what happens when somebody with MS goes to see a consultant for the first time.

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What happens when somebody goes and sees a consultant? What can they expect when they go for a visit to a consultant for the first time?

There is a set of international criteria, if you like, to help frame a diagnosis of MS and the current one is called, McDonald Criteria. That is freely available on the Internet. If people Google that they will find it. So what the neurologist is trying to do is see whether the person’s history, their experience of what has been happening to them leads them towards meeting that criteria, if you like. And again the vast majority of people with a diagnosis will meet that criteria, clearly some will be on the periphery, so on the edge of that criteria at some point. 

What the neurologist is trying to do primarily is demonstrate what is called dissemination in time and space. So time as in months, days etc. Space as within the central nervous system. So if a person presented with a history of visual disturbance and that sounded very much like optic neuritis. Sometimes people are surprised that the neurologist will then start to examine their legs. So what they are trying to do is demonstrate dissemination into space within the nervous system. So if the person has already told the neurologist that they have a problem with their eyes so they accept that and they are looking for neurological evidence of damage to say the spinal cord or the brain. So they are trying to demonstrate dissemination in time and space. 

They do that by listening to the person tell his story, taking a history, examination. So that’s moving limbs, looking into eyes, checking reflexes and then may arrange for further investigations. So that would be things like an MRI scan. So MRI provides a nice image of the structures of the central nervous system and you can see what looks like inflammation on there. They might do what’s called nerve conduction tests. So this is a test to measure the speed of a nerve, speed of the conduction along the nerve. So this might be sensory and the person might have to go and have electrodes placed on their skin. It might be to do with vision again and they’ll look at a chequered board and have little electrodes sitting on their head to measure the speed of conduction on their optic nerve. Also there is something called a lumbar puncture. The lumbar puncture is to try and remove some of the fluid that encases the brain and spinal cord to see whether there are markers of inflammation that have made their way into that fluid. So again MS is an inflammatory condition so when there is active inflammation going on within the body the body produces by-products of that if you like. They make their way into the fluid that circulates around and that will be seen in the lab, they will be able to identify that. The test is called oligoclonal banding.
Types of multiple sclerosis:

Relapsing remitting MS

Around 8 out of 10 people with MS will have the relapsing remitting type of MS. Someone with relapsing remitting MS will have periods of time where symptoms are mild or disappear altogether. This is known as remission and can last for days, weeks or sometimes months. Remission will be followed by a sudden flare-up of symptoms, known as a relapse. Relapses can last from a few weeks to a few months.
 

David’s wife Sandra has relapsing remitting MS. He explains that she has had periods of remission and relapse. Her symptoms come and go but they never seem to go back to how they were before.

David’s wife Sandra has relapsing remitting MS. He explains that she has had periods of remission and relapse. Her symptoms come and go but they never seem to go back to how they were before.

Age at interview: 49
Sex: Male
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And did they give it a name at that time of any particular type of MS?

They said it was relapsing- remitting. And obviously, you know, you look that up and you understand that you can go in remission for, you know, a long, long time. For Sandra it certainly seems to have been a bit like that. 

But Sandra’s is obviously, it’s definitely plateauing. It sort of tends to have an episode and then you’re left at another plateau, and then you get another episode and then you seem to be on a different level. Because, you’re not really going backwards but it definitely seems to be going sort of like a plateau type basis and I think that’s the thing, So, I think, at the moment, if you have something quite bad, you think that’s another big episode and then you reach a, reach a certain sort of level. I mean you can quite clearly see it now. It’s sort of staggeringly obvious now.

But there’s only been sort of like two or three, I think maybe three really bad episodes. Most of the times over the last five years it’s been fairly constant little bits. Very incremental sort of changes and then all of a sudden it’s quite a big change. Because last year it was the fatigue which just knocked Sandra for six. Virtually all the time she was just really, really tired. But she got over that. And was back, to not normal, she stopped going to the gym, but she was pretty active. Whereas at the moment, she can hardly walk ten yards. And in fact ten yards is probably the most. Whereas hopefully that will, you know, go into remission again and if it does that will be brilliant, because that means, that yes, okay you’ve had a horrible time, but then you’ll go back to being sort of, sort of semi normal. Well that’s what we hope. Because the eyesight was really bad, but then it got better. The fatigue got better. But you’re never quite back at the same position. You’re at a different position all the time.
 

Anthony describes his wife’s relapsing remitting MS as going up and down. The relapses have been very erratic, sometimes with long time periods between them.

Anthony describes his wife’s relapsing remitting MS as going up and down. The relapses have been very erratic, sometimes with long time periods between them.

Age at interview: 43
Sex: Male
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Fortunately, my wife has the relapse and remit kind of MS, which means she does go up and down with it. 

But each time she’s had a relapse she hasn’t got quite up to the level of mobility that she was before, although she has recovered each time, and the relapses that have come since then, it was diagnosed about nine years ago and since then, the relapses have been very erratic. Sometimes she’s had one a year. At one period she went four years without having one at all, which was great. But she hasn’t had one now for eighteen months but she had to start walking with a stick three years ago. 
Secondary progressive MS

Usually after around 10 years, about half of people with relapsing remitting MS will go on to develop secondary progressive MS. In secondary progressive MS, symptoms gradually worsen and there are fewer or no periods of remission.
 

Chez’s husband has had MS for 24 years but it has only changed to secondary progressive MS in the last five years and he was able to continue working until very recently.

Chez’s husband has had MS for 24 years but it has only changed to secondary progressive MS in the last five years and he was able to continue working until very recently.

Age at interview: 42
Sex: Female
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He has progressed from remit-relapse MS to secondary progressive MS in the last five years. And now he’s had MS, I think its 24 years so far. So, he’s not had a bad innings as far as MS has gone. But it’s been over the last five to seven years that the MS has taken quite a downward turn. In doing that it has caused all sorts of problems with him. He has had to give up work now. That happened about seven months ago.
 

Dave’s wife Trish had relapsing remitting MS that progressed to secondary progressive MS. When he retired he became her full time carer.

Dave’s wife Trish had relapsing remitting MS that progressed to secondary progressive MS. When he retired he became her full time carer.

Age at interview: 73
Sex: Male
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About, let’s see, it was 19, 2002 when Trish changed from relapse- remitting to secondary progressive, funnily enough I was just retiring. So my retirement went straight into being a carer, and a full time carer because Trish went into a relapse and has been in one, getting steadily worse, that’s one of the things about MS it never gets better, it’s just getting worse so as a carer you know you’ve got more joys and tribune to come. 
 

Robin talks about the phases MS goes through, first relapsing and remitting MS and then secondary progressive MS.

Robin talks about the phases MS goes through, first relapsing and remitting MS and then secondary progressive MS.

Age at interview: 72
Sex: Male
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There’s no cure, yes symptom relief. But also holding back the disease as you know with MS it goes through a number of phases I mean the first phase it just comes on the second phase it goes into relapsing remitting which means that you get better for a while and then you get a bad attack again and then you get better again and then you get a bad attack. And then you’ve got the final stage which is called secondary MS and once you get to secondary MS that’s it really, nothing you can do about that. 
 

Jeff’s wife has secondary progressive MS and they knew things would slowly, gradually get worse.

Jeff’s wife has secondary progressive MS and they knew things would slowly, gradually get worse.

Age at interview: 62
Sex: Male
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But each summertime, May, June time, there would be a little relapse. So she wouldn’t be quite so well. So, there’d be a dip in her performance. I would have to do a little bit extra to compensate. And then it was recovery time in the summer. But my wife had progressive, sorry, secondary progressive MS, so we knew things would slowly, gradually get worse.
Primary progressive MS

The least common form of MS is primary progressive MS. In this type, symptoms gradually get worse over time and there are no periods of remission.
 

Louise’s husband has primary progressive MS with a very gradual decline and over the last five years his mobility and other symptoms have got a lot worse.

Louise’s husband has primary progressive MS with a very gradual decline and over the last five years his mobility and other symptoms have got a lot worse.

Age at interview: 49
Sex: Female
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And he was diagnosed, at the time, obviously, had a lumbar puncture and we got the diagnosis. At the time, obviously, he was still working but he was diagnosed with progressive MS. He hasn’t had the relapsing and remitting type. He has always just had a very gradual decline. He has sometimes when he is particularly bad, and has episodes when he is, you know, pretty disabled and then other times, he manages to get around a little bit more. But, realistically, over the last say four or five years he has got a lot worse in terms of mobility and yeah, just in terms of symptoms.

Like I said at the beginning of learning to live with MS, you know, like I said, like living with cancer or living, but it is that you think that you’re not going to, as you say, from the outset, yes, go home and you’ve got progressive MS and that’s it. But you do learn that there will be bad times but there are other times where things aren’t so aren’t so bad but you do have to accept that, you know, your life will be, as a, I think from my point of view, as a wife, partner, just does change completely, yeah. You know, you, I can’t pretend otherwise. From my point of view, that’s how it’s panned out. So initially, maybe for the first few years, you know, but once you’re at the role becomes much more of a carer it is different yeah, yeah.
Who gets MS?

It is estimated that there are currently around 100,000 people with MS in the United Kingdom.

Symptoms usually first develop between the ages of 15 and 45, with the average age of diagnosis being about 30.

For reasons that are unclear, MS is twice as common in women than men, and more common in white people than black and Asian people.

What is the treatment for MS?

There is currently no cure for MS but there are a number of treatments that can help. MS can be treated with disease-modifying drugs. These are designed to slow the progression of the disease and reduce the number of relapses. But they are not suitable or effective for all people with MS. There is also a wide range of treatments, including steroid injections and physiotherapy, which can help relieve symptoms and make day-to-day living easier. 

For more on treatments see ‘Decisions about treatment

Living with MS

MS can be a challenging and frustrating condition to live with but new treatments over the past twenty years have considerably improved the quality of life of people with the disease. 

For example, many people continue to work for many years after being diagnosed with MS. Others find that MS symptoms make working difficult, or that having MS changes their priorities. This can also be true for the family members of a person with MS. Many people we spoke to combined work with varying degrees of caring for a relative with MS. People with MS and their families may find that during relapses they have to adjust what they do and having a job which offered flexibility to have time off at short notice had been very important for people. Adapting to life with MS can take time. Family members may have to take on more tasks around the home and help the person with MS with some activities. As the disease progresses people with MS may experience more problems with mobility and need more help. This will affect other family members and may require some home adaptations. Living with MS can throw up all kinds of practical issues, and mean that coping financially is more of a challenge. Many advised learning as much as possible about MS and getting information about what help or support is available. Robin said it is vital to get information about resources that can help you. With MS, it's often the little things that can make a difference. Many people said, ‘You’re not alone’ and talked about the importance of asking for help, whether from friends, neighbours, charities or statutory services. The key messages here were, ‘Don’t be frightened to ask for help’ and ‘Be persistent’, as it can be difficult to know your rights and ensure services are provided. ‘Be prepared for the worst,’ Dave said, ‘rejoice when you get something better.’

Is MS fatal?

MS is not fatal, but some complications which can arise from more severe MS, such as pneumonia, can be. The vast majority of people with MS will have a normal life expectancy, but for some people where there is very complicated and advanced disability life expectancy is probably shortened. As a result, the average life expectancy for people with MS is around ten years lower than the population at large.
 

Dr Richard Warner a MS Nurse Consultant explains that MS in itself does not have a great impact on life expectancy but that complications can be life limiting.

Dr Richard Warner a MS Nurse Consultant explains that MS in itself does not have a great impact on life expectancy but that complications can be life limiting.

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So life expectancy, again it’s, there have been several studies that have tried to answer that question, if you like. There is a range of interpretation from those studies. If you looked at life expectancy in totality there is an argument that life expectancy for that population of people, so the whole group of people, might be reduced by in the region of somewhere between three and seven years. If you start to unpick that information what it looks like is that the vast majority of people with MS will lead a normal life expectancy. In other words, MS won’t adversely affect their particular life expectancy. For some people where there is very complicated and advanced disability life expectancy is probably shortened and it’s that group then skews the figures for the overall population. And again there is an argument about whether MS in itself is life limiting or whether it is complications that come with MS. So I would suggest that the major life-limiting risk would be what’s called as aspiration pneumonia. This is where people, their swallowing ability becomes unsafe and fluid can go down into the lungs, consolidate, causing pneumonia and that can be very serious and life limiting.


Last reviewed March 2020.
Last updated July 2018.

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