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Why diagnosing MS isn’t always quick or straightforward

27th May 2015 by helena.jidborg

The media has highlighted the results of a survey published today by the MS Society about being diagnosed with multiple sclerosis. The survey raises issues about the challenges of being diagnosed with MS and the delays and mis-diagnoses that some people experience. It reflects many of the themes that came out in the MS Trust’s recent research into the experience of being diagnosed with MS.

Be prepared!
For anyone concerned that they have symptoms that could be MS, your GP will usually be the first health professional you see. It is important to be as clear as possible about what has happened, your concerns and what you hope will happen next. Even if your GP wants a short period to ‘watch and wait’ you can agree a reasonable time for a follow-up appointment and that, if things haven’t changed, you would then like a referral to a neurologist. This shortens the wait and will help move things forward. It can help to keep a symptom diary so that you and your doctor can see what’s been happening with your symptoms while you are watching and waiting.

Diagnosing MS isn’t always straightforward
No diagnosis of a long-term condition is an easy experience and MS certainly poses particular challenges. What matters most is getting to the right health professional who can guide and advise you and getting reliable information to help you on your way.

Symptoms of MS are variable from one person to another and are also often symptoms of other conditions. This means that telling the difference between the possible diagnoses is critical. A GP can’t make a diagnosis of MS themselves as specialist tests will be needed. However, GPs will understandably be keen to make sure that their patients are referred to the right specialist doctor. This means that they may want to try and rule out some other possible explanations for symptoms before referring to a neurologist so may ask for blood or other tests first.

That isn’t a reason for a GP to be too cautious and take a very long ‘watch and wait’ approach. A GP is likely to only have a few people with MS on their books and so may not be aware that there are more treatment options for MS now or feel a sense of urgency to have a neurologist’s opinion.

Get good information
Every day the MS Trust info team receive calls and emails from people who have symptoms that they are concerned about. Although we can’t diagnose MS, talking through your symptoms and discussing how to move forward can help you continue to feel in control of your health and your life, even when things are uncertain. Someone who contacted the MS Trust info team recently wrote to us afterwards to say:

“I just wanted to say a quick thank you, you really went out of your way to help me whilst I was waiting for my diagnosis… You made me feel much better when I was feeling a bit lost. Thanks a lot. It made a real difference. I just wanted to recognise that you understood my anxiety and went the extra mile out of kindness – and that meant more than anything.”

We have six information officers who together have over 50 years of experience in providing MS information and have spoken to thousands of people with MS or who are worried that they might have MS. They can help by providing reliable information, assisting you to develop a way forward and listening to your concerns. The Information Team can also suggest which of our publications or online content might help you.

Looking forward
If it does turn out that you are diagnosed with MS, then getting good information and getting in contact with an MS specialist nurse are vital. This will help you get started on your journey of understanding MS and taking charge of your health and your life. Our Making Sense of MS  resources are a great place to start learning about MS and the MS Trust can also help signpost you to your nearest MS team. We believe that getting MS specialist support is crucial to make sure you can make the choices about managing your condition that are right for you.

You can join our Heart of MS Care campaign to make sure that everyone with MS has access to MS specialists – neurologists, MS nurses and allied health professionals like physiotherapists and occupational therapists – and get the best possible care.

Amy Bowen, Director of Service Development at the MS Trust

My Big (out of the) Blue Jump

22nd May 2015 by laura.percival

MS Trust Fundraising Officer Jess Wright tells us about the Big Blue Jump which took place during MS Awareness Week and her own impromptu parachute jump.

The morning of Saturday 2nd May was an early one. We were heading down to Chiltern Park Aerodrome in Oxfordshire to meet all our supporters taking part in the Big Blue Jump, the MS Trust’s parachuting day to mark the end of MS Awareness Week 2015. I was slightly nervous as the clouds formed, knowing we had people travelling from across the country (and two families taking a ferry from the Isle of Wight) to take part in the event. We had our fingers crossed that the weather, the skydive event planner’s biggest opponent, wouldn’t ruin this day. Little did I know this was the least of my worries for the day ahead…

Eddie Murphy and Ben Clarke

The clouds clear

It was really great to meet all 11 participants and their families and friends who had travelled miles to support them on the day. As the clouds were clearing, the first two MS Trust skydivers were up in a plane ready to go. Eddie Murphy (in his pink onesie) and Ben Clarke floated to the ground with smiles from ear to ear.

Next up was David Optholt, who bravely jumped and landed safely back on the ground, then Paul Drake stepped up to the mark and took the leap of faith. Paul had previously suggested I should take part – I’d quickly changed the subject!

Later in the day it was Donna James and Anthony Morris’ turn to go up in a plane, along with Aurore Palomba and Ksenia Goryainova. They faced their fears together and completed their tandem skydives.

It was so great to see everyone in the group get through the nerves and the anticipation, fly up to 10,000 feet and jump out of a plane. You could ask yourself, why go through it all? It was clear that each of the participants wanted to take part because MS had affected their lives in one way or another and they wanted to make a difference.

No place to hide

You are probably wondering how I got to be part of this day, other than happily cheering our skydivers back to the airfield from the side lines. The suggestion was made for me to take part not just in a conversation with Paul, but on a loud speaker (thanks to Emma and Martin from the London Parachute School) followed by cheers and agreements from the MS Trust crowd! There was no place to hide! Having seen the others complete their skydives and face their fears, frankly there was no real excuse for me not to take part.

Next thing I know, I am whisked off to complete my skydive training, there is no going back now! I was lucky enough to join MS Trust supporters Alyson, Jeanette and Jennifer in the plane.

Alyson, Jess, Emma, Jeanette and Jennifer

Bit of a blur

Lots of people have asked me what it was like. To be honest it was a bit of a blur. When Paul (my tandem instructor) and I hung out of the plane doors it was really scary, but there was no time to be scared as the next thing I knew we were freefalling really, really, really fast into the clouds over the Oxfordshire countryside. This was simply exhilarating. I screamed… a lot (sorry Paul).

When the parachute was deployed the fast, noisy, rush quickly changed to silence. This just demonstrated how high up we were, miles away from any noise from the ground (except for the giggles from Paul at HOW MUCH I screamed). The view was amazing, something that cannot be compared to any HD screen, and stretched for miles and miles. The only thing in front of your view is your feet dangling over it all as you look down. This was the time I could take in everything around me and what I will remember the most – gliding and spinning back to the ground with one big (blue) bump! As the last skydiver of the Big Blue Jump the grin on my face must have mirrored everyone else’s I had already seen that day.

A day I will never forget

I am so glad I got to meet all the wonderful people who joined us for the Big Blue Jump on 2 May 2015 and made the day one I will never, ever forget.

If you are thinking of taking part in a skydive, DO IT! I hate flying and, if anything, I think it helped me to feel better for the next time I travel by plane. It is an such an incredible feeling which is only made better knowing that the money you raise from doing it will help those living with MS today!

I would like to say an extra thank you to Nigel Synnott and Brian Charlesworth, who unfortunately couldn’t take part but came to support on the day!

Visit Jess’s fundraising page on Virgin Money Giving

Find out how you can book your own skydive

15 minutes with MS Trust Research Manager Tracy Nicholson

11th May 2015 by Guest blogger

Tracy NicholsonTracy Nicholson is the Research Manager at the MS Trust. She was diagnosed with MS in 2000. To celebrate their 50th birthdays, she and her friend Katrina decided to do a cycle, trek and kayak adventure in North Vietnam to raise funds for the MS Trust.

How did you come to work for the MS Trust?

I was diagnosed with MS in 2000. Back then information about MS wasn’t widely available, but at the time, quite coincidentally, my husband was working on the development of the MS drug Tysabri, so he had been working with the MS Trust. He introduced me to Chris Jones, the founder of the Trust, and she was absolutely brilliant – she really understood what I was going through. I lived quite near the Trust’s offices in Letchworth so she asked me to come in and meet the team. It was about the time that the Trust was thinking about becoming involved in the Risk-sharing Scheme to help people with MS access the first four MS drugs. I was working in clinical research at the time so they asked if I would be interested in helping out.

What difference do you think the Risk-sharing Scheme has made for people with MS?

I know it’s made a huge difference. I was diagnosed by a general neurologist in a hospital without any specialist MS nurse. When I compare that to now – when I have an MS specialist neurologist, an MS specialist centre, an MS nurse and I get six-monthly reviews – it’s come so far. And that’s because of the Risk-sharing Scheme.

How did your Vietnam trek come about?

It came out of turning 50. I’ve never really travelled. I’ve been to lots of places but I’ve never packed a backpack and gone off into the unknown. So this was my opportunity to do it. The trip itself was completely self-funded. We found the trip we wanted to do and all my friends and family gave donations towards my ticket in lieu of 50th birthday presents. I had already made the decision that I was going to challenge myself but then I thought it would be good if the MS Trust could benefit on the back of it.

What was the most challenging part of the journey?

The weather! We were led to believe it would be 16-19 degrees at this time of year – we thought it would be like a nice English summer. In reality it was 30-35ºC and incredibly humid. The accommodation was also quite challenging. We stayed in homestays (local villagers’ own homes) and it is fair to say that I didn’t really know what to expect. Staying in the equivalent to a hut, sleeping on thin mattresses in open rooms with people I didn’t know, both men and women, and needless to say no privacy! Not my ideal for a good, restful night. And then there were the toilets – it made France in the 1970s look positively luxurious!

What was the highlight?

Travelling through the villages and the insight into the locals’ lives. It felt a real privilege to have been able to get up close and personal. Their lives are so different from ours, with so little material wealth, but they are so happy. I’ve never done anything like that. I think if you went as a tourist you simply wouldn’t get that insight into the country: the rice paddies and the buffalo.

What kept you going?

At one point I got really sick and people were telling me I didn’t have to do the 50k cycle ride planned for the following day. But I kept saying I do have to do it! A big part of my motivation was that I kept thinking all those people who had sponsored me and raised all that money. I know what the MS Trust does. I know all the things they do, all their enthusiasm and energy. And I know that it’s all done on a tight budget. Every penny counts. It doesn’t matter how big or how small the amount you raise is, whether it’s £5, £50 or £500 it can make a real difference to someone living with MS.

What would you say to someone considering taking on a similar challenge?

Just do it! I had no idea what I was letting myself in for. But once I got there, it was amazing how you just get into the zone. And it’s amazing what you can do. You just focus on the challenge and getting through each day and as I look back now I feel enormously proud of what I have achieved for both myself and the MS Trust. It was a great experience in a stunning part of the world and it has left me with so many great memories.


This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

Improving support for people transitioning to SPMS

11th May 2015 by Shan Teo

portrait photo of Dr Freya Davies

Finding that the pattern of your MS is changing from relapsing remitting to secondary progressive can be a distressing experience. Many people report that it feels like being diagnosed with MS all over again. How can we improve the support available to people going through transition? Two years ago we commissioned a team of researchers at Cardiff University to explore people’s experiences and look at ways support could be improved. Dr Freya Davies explains what they found out.

What did we do?

We interviewed people with MS, their carers and members of the MS team to find out more about their experiences and suggestions for improvements. We also held two group interviews with people with MS and carers. Most of the people with MS we interviewed had experienced their MS changing from relapsing remitting to secondary progressive.

What did we discover?

Discussing SPMS

People found out their MS had progressed in different ways. Some noticed a change themselves and confirmed their own suspicions by discussing this with the MS team. Sometimes a neurologist or nurse discussed the transition in a clinic appointment. Some people only found out by chance when they overheard a conversation or read a letter written about them.

Not everyone felt labelling their MS as progressive made much difference to them. Whatever their MS might be called they were already getting on with adapting to the day to day challenges of life.

“I suppose at my stage it doesn’t really matter whether I am relapsing remitting or secondary progressive […] it is what it is sort of thing. And I’ve learnt to manage it as best I can”

Some people noticed the transition affected them more. Finding out without enough explanation of why they now had SPMS and what that meant for them often left people confused. A lack of information could mean people tended to focus on the ‘worst-case scenario’. Many people wanted an explanation about SPMS during a face-to-face appointment with the MS team. They also liked the idea of some written material to refer to after their appointment and the chance to meet other people coping well with SPMS.

“I understand that it’s secondary progressive now. I understand it could get a lot worse in the future, I understand it could stay the same for the rest of my life so, you know I’m pretty clued up – well nobody knows how it’s going to go, I’m well aware of that.”

The neurologists and MS nurses we interviewed told us they were often unsure of when to broach the topic of progression with their patients. They often only brought up progression once they were very sure it had happened, which was often some time after the progression first began.

Support from the MS team

Many people felt very satisfied with the care they had received, particularly from their MS nurse. Being able to build a relationship with an MS nurse and knowing they would provide ongoing support was highly valued. Some people found hospital appointments could be frustrating and didn’t feel like they gained much from attending. They wanted appointments to be more focused on the things that they felt were important to them, and not necessarily the things that were important to the doctor.

“I think when I do go to see him [neurologist] it’s so brief, and the next thing you know I’m going out the door and he’s seeing me again the year after and I’m thinking ‘what was that all about?’”

Support from other sources

The healthcare team was just a small part of the support network people with MS and carers developed over time. Other important parts of this support network included the relationship between people with MS and their carers, their wider social circle (family, friends and colleagues) and peer support (from other people with MS or carers). People with MS and carers told us about the things they did to help themselves. Keeping active both physically and socially was important to many people. It was felt that services to promote maintaining activity, such as local exercise schemes, should be expanded and better promoted. Access to information was also important but not everyone wanted the same amount of information at the same time. People liked information to be simple and reliable. A variety of different formats were suggested including websites, emails, leaflets and face-to-face interactions. Where people wanted to get help and support varied, so we suggest it is very important to provide different options to suit different people.

“I maintain a good attitude you know, yes something could happen in the future but I live today, in the present, and I do a lot of yoga. So that keeps me sort of mobile. It keeps what I’ve got going, going, you know. It’s important to keep what you’ve got.”

Support for carers

Everyone interviewed recognised the important role that carers play and some felt that more support targeted towards carers should be available. Some carers felt that around the transition their caring role was manageable as long as the person with MS was well supported. Many of the carers we interviewed had never thought about or looked for help for themselves.

Support for health professionals

Some symptoms experienced by people with MS were more difficult for health professionals to help with than others. In particular, health professionals felt more psychological support for people with MS would be useful. They were also keen to try to promote the self-management of MS among their patients. They noticed that symptoms like fatigue and low mood could sometimes make it hard for people with MS to self-manage and wanted to learn strategies to provide more help.

How will this research help people with MS?

The research has helped us to better understand how support during the transition phase could be improved. It is clear that a ‘one size fits all’ approach is not going to work well and that services need to be more flexible to ensure information and ongoing support are delivered in a way that suits each individual. For people with MS it is important to have clear reliable information about SPMS. Being well informed earlier on might help people gradually adjust to a change in their disease course.

We need to encourage health professionals to make sure they check what information people with MS actually want. The transition can be seen as a good opportunity for people with MS to take a more active role in setting the priorities of their care. Although doctors and nurses may be the experts on medications, people with MS are the experts on their own lives, challenges and priorities. Specific services are likely to be particularly beneficial to people around the transition, including help to keep active, to develop self-management skills, and to receive psychological support. Focusing on designing these services, and training professionals to deliver them should help to improve the quality of life of people around the transition.

What is MS transition?

There is often a reluctance to talk about progression, by both the doctor and the person with MS, and the discussion is often postponed.The change between types of MS is not a sudden switch but a gradual process where the relapsing and progressive patterns overlap for a while.

Sometimes there can be differences of opinion. The person who is living with MS may feel their MS is progressive. The neurologist, who is observing it in a clinical setting, may take a more cautious view and prefer to monitor symptoms over a period of six months or more.

It’s not unusual for people to say that when they were told they had secondary progressive MS, the information was given fairly casually and with little time for discussion. Yet the news can bring up similar feelings to when someone was first diagnosed and can be more upsetting if little is offered to help them.

The effect of words

It is not uncommon for people to think that progressive MS will be worse than the relapsing type. The medical terminology is probably unhelpful in this. Relapsing remitting and secondary progressive simply describe the clinical nature of MS, not the life of a person living with the condition. People with either form will have better or worse experiences depending on their particular symptoms and the impact these have on their activities. The fact that one form follows the other does not necessarily mean that MS has become worse.

To find out more about secondary progressive MS see mstrust.org.uk/spms or order the SPMS book here.


This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

“I think it’s a golden time for progressive MS research…”

11th May 2015 by Shan Teo

photo of Dr Jeremy ChatawayDr Jeremy Chataway is a consultant neurologist at the National Hospital for Neurology and Neurosurgery in London and has been involved in MS research for many years, most recently into the effects of simvastatin on progressive MS. He’s now leading on the MS-SMART trial, looking at the effects of three drugs which are already used for other conditions on people with secondary progressive MS. The trial is recruiting throughout 2015. Dr Chataway spoke to Open Door about the state of progressive MS research, and the promise of his current research

At a recent MS conference, Dr Robert Fox said that within 10 years he thinks we will be able to treat progressive MS in the same way we can now treat relapsing MS.Do you agree?

I certainly think it’s a golden time. Over the years, the MS community has achieved a number of drugs that control relapse rate, ultimately quite effectively. That has allowed everyone’s attention to fully move onto what was always the major problem: progressive MS, in whichever form that progression is. And we have a developing pipeline of drugs which I hope will come through and will hopefully prove themselves in final phase trials. I would say that it’s a different time from previously.

Why has there been so little research into progressive MS until relatively recently?

I think there are a number of reasons. The relapsing phase is the inflammatory phase, which has always responded to steroids. So we knew roughly what type of drug we’d need to control the relapse rate or the inflammatory state. Our dozen or so drugs are, if you like, more advanced derivatives of that. The fundamental biology and mechanism of the inflammatory stage is much better known. Whereas in progression it’s still fairly rudimentary, and I think a major piece of work does have to be done. As we understand the biology more, that will allow us to obtain more and more drugs that have an effect on the progressive phase.

Why are you choosing to look at drugs that are already available?

A big piece of work was done, primarily by the Edinburgh group, looking at all reports of all drugs that could have a role in progressive MS, but which also could have some synergistic effects on other degenerative conditions – for example, Alzheimer’s or Parkinson’s or motor neurone disease. A big sweep was carried out, and it boiled down ultimately to about seven drugs. It just so happens that a number of these drugs are what we could call ‘repurposed’, that is, they’ve been used in other conditions but we think they have a common pathway or mechanism which will allow them to be helpful in progressive MS. And the advantage of these sorts of drugs is that we know a huge amount about them.They have been tried in normal medical practice in millions and millions of people, so their safety profile is very well understood. So that’s how it came to be that we are trialling three repurposed drugs.

What makes you think they might be effective in MS?

Research into small groups of people, particularly following detailed MRI scans, have shown that there’s a good signal or hint of effect. The MS-SMART trial allows us to ramp up the number of people taking the drugs by a factor of 10. This means we can look in a much more detailed way at scans, other investigations and also the effect of the drug on the actual person. For example, amiloride, which has been looked at extensively by the Oxford group, seems to block a particular calcium channel in the brain, and we think that this could be helpful at this stage of the disease. When they did their work they showed that applying that drug to a group of people with progressive MS reduced the rate of brain shrinkage in particular parts of the brain. That’s the primary effect we’re after. Can we reduce the rate of brain shrinkage, or atrophy, which occurs in MS a little bit more than normal? We know that that’s related ultimately to disability or how the person is.

What are the advantages of trialling three drugs in parallel?

Progressive_multiple_sclerosis

We spent a huge amount of time over a five year period working with a variety of experienced statisticians, trying to develop more efficient trial designs. Because unfortunately if you do it one by one by one we’ll be here for a long time. So what we’re trying to here is have three bites of the cherry. There are three active drugs: A, B and C and a dummy drug. And a person is ‘randomised’ as they call it, to one of those four arms. So in this way we can look at three drugs simultaneously and see if there’s an advantage over the dummy drug.

This model has been used very successfully in oncology. It’s quite a standard approach in cancer work, and of course they’ve been immensely successful. So we’re trying to borrow from a successful model and apply it into neurological science, into a very difficult part of the arena. We hope this will be the first of many attempts to do this kind of work.

How long will recruitment last?

Recruitment will take place through 2015. So we have 440 places in the trial, and they will be recruited from 10-15 sites in England and Scotland over this one year period. People are in trial for two years. The last patient recruited on New Year’s eve 2015 will be in trial for two years after that, which will take us to end of 2017. And the analysis will take a good six months after that. So we would hope to begin reporting results in 2018.

If the trials are successful, how long until treatments are available?

I think it depends on the extent of the results but I think if we see positive results it tells us a number of things. It first of all illuminates what’s going on in MS. If a particular drug is successful then it must be interacting in a part of the process that’s important in progressive MS, and turning it down or switching it off. So it will illuminate understanding, and then we would have discussions with the regulatory authorities on how to take it forward. And that’s a complex process, and licensing and labelling is very much a discussion in progress. It would need to go to a final individual disability led stage.

Is the process made more complicated by the fact that the drugs are already being used for other conditions?

This is a very interesting point and it’s starting to be debated. It does and it doesn’t. If a drug is owned by a drug company, they would own the licence to that, and they would fund the research and development programme. But then when the drug becomes available it would have a certain cost attached to it – and that may be a considerable cost. That’s the traditional model for a drug that’s owned by a pharma company. Here we have repurposed drugs that are generally out of patent and are being tried for a different indication in this phase 2 trial. So then I think there’s an evolving discussion about how to handle these drugs if they are found to be, or show good hints of being, effective in their trials. That’s an ongoing discussion with the regulatory authorities.

Take part in the MS-SMART trial

If you’re interested in taking part in the MS-SMART trial visit www.ms-smart.org

Trial participants should

  • have secondary progressive MS
  • be able to walk at least 20 metres (with the support of two crutches) or up to 500 metres without help
  • be age 25-65 (inclusive)

You can’t take part if you are currently taking a disease modifying treatment for MS or if you’re taking an SSRI anti-depressant.


This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

Be kind to your mind

11th May 2015 by Shan Teo

photo of Jo JohnsonWe often focus solely on our physical health but looking after our mental health is also vital to our sense of wellbeing. Jo Johnson, a consultant neuropsychologist with a special interest in MS, introduces practical steps you can take to improve and maintain your mental wellbeing

MENTAL HEALTH LIKE physical health is determined by a number of factors including genetics, life events and also thoughts and actions. As MS can affect regions in the brain that control emotions, people living with MS may also experience changes in mental health that are neurological rather than the result of anything that is happening in day to day life.

Research suggests at least half of people with MS will experience mental health symptoms at some point, most commonly depression or anxiety. People with a family or personal history of these symptoms are more vulnerable. When you see your MS nurse, it may be worth discussing any previous experiences of mental health symptoms or instances of mental health problems in your family.

It is common for people to experience symptoms of low mood and anxiety in the first couple of years after a diagnosis of MS, with often very intense feelings in the early months. From a young age most people have an idea of how they want their life to progress. This might include having long-term partners, children, financial commitments and career paths. A diagnosis of MS introduces uncertainty about the future and people often experience feelings of loss and grief at the thought of losing the life as they had planned it would be. Feelings might include sadness, tearfulness, disappointment, anxiety, anger and even guilt. It is not surprising to feel like this at times and for many these feelings may come and go as life moves forward. However, for some, they can persist and become a self-perpetuating state of low mood that starts to interfere with daily life. It helps to acknowledge and express these feelings. If you find it hard to talk about this to other people, keeping a journal of your honest thoughts and feelings can be beneficial.

The good news is there are things you can do to improve your mental health and to stay mentally well whatever your situation or diagnosis.

What can you do about it?

The first step is to realise that your mind requires care in the same way as your body. If for the whole of 2015 you eat high fat and sugary foods, smoke and don’t take any exercise, there is a good chance that by 2016 you will be less physically healthy than you are now. This principle is the same for mental health.

The first step is to learn what can be done to improve mental health. It then requires a conscious decision to prioritise and practise what helps.

It’s important to note that if you feel low or anxious most of the time, have trouble sleeping and have little or no interest in life, you need to speak to your GP as you may need medication first to improve.

If your symptoms are more variable or you are on medication, research shows that looking more closely at how you think and what you do can be as much help as taking pills. Here are five examples.

Jo’s top tips for staying mentally fit

From changing your internal soundtrack to focusing on the here and now, here are five ways you can maintain your mental wellbeing

1. Manage your thoughts

Everyone experiences thoughts that are unhelpful or upsetting from time to time. Be aware of these thoughts and their impact on mental health. Last year I published a book called ‘Shrinking The Smirch’. In the book we ask the reader to imagine their thoughts are being played on an imaginary iPod. Become aware of how much of the time you are listening to your mental iPod and how often it is playing unhelpful tunes. These could be to do with your MS or may be about other issues in your life. Playing those tunes over and over will make you feel sad, upset and fearful and make it harder to feel mentally well. Managing your thoughts needs practise.

TRY THIS

Notice when you are listening to unhelpful thoughts and then imagine tugging out your mental iPod as if it were playing music you hate. A useful website for information on managing your thoughts and negative feelings is getselfhelp.co.uk

2. Learn to live in the now and spend less time in your head

be_kind_to_your_mind-open-door

Research shows that staying in the present moment helps mental health. Some people call this mindfulness but it just means concentrating on what is right in front of you instead of being on automatic pilot. Most of us spend a lot of time caught up in our heads – regretting the past, fearing the future or just trying to manage the challenges of the day. Getting hooked up into our heads causes stress but it also can mean that many moments of pleasure pass by unnoticed because we aren’t paying attention.

TRY THIS

Take a moment to focus on what is happening in the here and now. What can you smell or see?
Are you hot or cold? Tense or relaxed?

For more on mindfulness see mstrust.org.uk/mindfulness

3. Keep a gratitude diary

When life is tough it’s easy to lose sight of the good things. Research shows that recognising the good things that are happening strengthens the ability of the brain to focus on positive things.

TRY THIS

At the end of each day, write down five things that have gone well or for which you are grateful.

4.Treat yourself with compassion

When you feel low, do you treat yourself like you would treat a friend and offer yourself support and understanding? Or do you tend to be a self bully and become harsh and critical? Unsurprisingly people who can show themselves kindness feel mentally better.

TRY THIS

Be aware of what you say to yourself and try to be more friendly.

5. Think about food and mood and exercise

There is good evidence that a diet containing high sugar and fat, as well as too much alcohol, makes people more depressed and anxious. It is also true that a little regular exercise is better than anti-depressants for lots of people. Often people set themselves up to fail by setting unrealistic goals around food and exercise.

TRY THIS

Try making small, achievable changes that are more likely to succeed – for instance, giving up butter on a Tuesday, parking the car slightly further from the school and walking the last bit or swapping one cup of coffee for water. If you can make even tiny changes but keep them up you will notice benefits to your body and your mind.

To read more about living well with MS visit mstrust.org.uk/livingwell
or order the Living well with MS factsheet
For more about Jo’s work visit her Facebook community at facebook.com/shrinkingthesmirch

This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

The new focus on progressive MS

11th May 2015 by Shan Teo

Professor Alan ThompsonThere have recently been encouraging developments in understanding and treating progressive MS. In this issue of Open Door we report on MS Trust research into the experience of transition between relapsing and secondary progressive MS and hear from Dr Jeremy Chataway on his research into the effects of three drugs on people with secondary progressive MS. To introduce the feature, Professor Alan Thompson, who is co-chair of team that coordinates the International Progressive MS Alliance’s research programme, explains how the focus has changed

Why have we seen comparatively little research into progressive MS until recently?

The advances in the treatment of relapsing MS have been quite extraordinary. This is because we have drugs that suppress or modulate inflammation. What is much more difficult is how we stop neurodegeneration – that is, the destruction of nerve cells. The approaches you might take are several. One might be to attempt repair the damaged protein around the nerve cells – that is, stimulate remyelination. Another might be to protect the nerve axons so they don’t get damaged. But it’s a much more complicated scenario, which is the main reason why we have seen so much progress in relapsing MS but relatively little in progressive MS. I should also say though that the focus of research activity and the pharmaceutical industry has been very much on relapsing MS over the last 20 years. It’s now important to change the focus, or at least move it so that it now includes progressive forms of MS.

What do we need to do to find disease modifying treatments for progressive MS?

We need to think about trial design: can we think about new and different ways of designing trials that don’t take a very long time to reach conclusions? Can we identify new clinical outcomes and can we include new biomarkers that give us some insight into the underlying neurodegeneration? For me most important, if we are to develop new treatments, is to get a better understanding of the mechanism underlying neurodegeneration. It’s only by understanding the underlying mechanisms that we can identify new targets for treatment. And it’s only by identifying new targets that we can find new ways of stopping progression. An understanding of the underlying mechanism is critical.

How is the International Progressive MS Alliance working to change things?

The International Progressive MS Alliance was set up with a very clear goal: to deliver treatments for progressive MS and to improve symptomatic management and rehabilitation. It’s a very simple goal, but a very challenging one. We all felt that it is essential to raise the profile of progressive MS. It is important to coordinate research activities worldwide and to bring together the key international figures in the field so that they will work together. So what we need is to identify the blocks to treatment and lay out a research programme that will address those blocks over time. For example, one of the blocks is identifying targets for treatment. Another is to develop new clinical trial design and to identify new outcome measures that can be used within those trials – both biomarkers and clinical measures. Another is to move those trials on into bigger, more definitive studies. And finally to address and advance the areas of rehabilitation and symptomatic management.

We’ve had an overwhelming response from the international MS community, which is now working together in a way that it had never done before. We have a single scientific advisory committee and a single international review committee. We’ve set up several research calls. Our first call was for small grants that stimulate interest and engagement, and that’s been a huge success – involving over 20 countries. Now we’re moving onto a much bigger research call which is looking at major collaborative networks.These will attract worldwide collaborations, which we anticipate will result in transformative research that will make a huge difference to people with progressive MS.

To find out more about the work of the International Progressive MS Alliance visit progressivemsalliance.org

This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

Thank you for making our work possible

11th May 2015 by Guest blogger

Did you know that we received £1.1 million last year from people like you raising funds and donating?

Combined images600x297THAT’S EQUIVALENT TO what we spent in the same year providing information, campaigning on the things that matter to people living with MS and funding research to improve services, treatment and support.

Your support really does make a difference for everyone who contacts the MS Trust. Every person who wants to know how they can manage a new symptom, choose between treatment options, find better ways to cope at work or support a family member who has been recently diagnosed. We can only be there at the end of the phone or online thanks to you.

When we talk about fundraising, we’re not just talking about extreme challenges and activities like running, skydiving and trekking. Last year we received £2,824 thanks to people who remembered to visit our page of shopping links before they shopped online with stores like Amazon, Sainsbury’s and John Lewis. That’s enough to run our freephone MS information service for a week.

We rely on lots of generous people who take time out of their busy lives to do something – anything – to help people whose lives are affected by MS. That might be getting sponsored for a personal challenge like giving up chocolate for a month, selling homemade jam or greetings cards, or holding a charity event like an open garden or pub quiz. Almost 3,000 people supported us in 2014 by raising funds or donating and we are extremely grateful to every one of them. You can read some of their stories online in our Fundraising Hall of Fame.

At the end of last year, Jennifer Cooper’s Rainbow group raised £180 by holding a sponsored obstacle race as part of our Reindeer Rally campaign. Jennifer, who lives in Bradford, told us that she wanted to support the MS Trust because her family had found our information useful when her mother was diagnosed.

She said, “My mam was diagnosed with MS eight years ago after living with it for more than twenty years undiagnosed. When we first found out it was hard to come to terms with because we knew nothing about it, but the hardest thing was telling my then eight year old niece and six year old nephew.”

“This is where the MS Trust came in. The literature they supply is amazing and made it easier to explain to my niece and nephew what was happening to their Grandma. When the opportunity came for me to be able to give something back I had to jump at the chance. I knew my Rainbow unit would thoroughly enjoy the Reindeer Rally. We can’t wait to do it again next year.”

Thanks to Jennifer and the children at Rainbows, we can now provide copies of our Kids’ guide to MS and the accompanying book for parents, Talking with your kids about MS, to help another 30 families who are in a similar situation.

There are all sorts of ways of getting involved and raising funds, which help us do all sorts of things to help people with MS – from producing this newsletter every three months, to training each new MS nurse that comes into post.

If you would like to help raise funds to support the MS Trust’s work, we can find something for you. We run a programme of fun events throughout the year, some of which are listed to the right; we can also provide support materials for any fundraising activity you’d like to do independently. And there are lots of different ways to donate, including setting up a regular monthly or annual gift by Direct Debit, playing our weekly lottery or supporting an appeal.

With your help we can make even more of a difference for the 100,000 people living with MS in the UK, and the 100 people who are diagnosed every week. For more information, please get in touch with our fundraising team on 01462 476707 or fundraising@mstrust.org.uk.


This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

Your best shot?

11th May 2015 by Shan Teo

picture of vaccinesThe issue of vaccinations and multiple sclerosis raises a number of questions for people with MS. Are the treatments safe? Do they work in MS? Are they affected by other treatments? Here we look at some of the more frequently asked questions

What are vaccines?

When the body is infected by a virus, bacterium or other invader, the immune system responds to fight it off. Once an infection is over, some of the antibodies developed to fight it remain in the immune system. This creates an ‘immune memory’, which means that should the same organism invade again, the body is already prepared to combat it. This is why diseases such as mumps or chicken pox usually only occur once.

Vaccination uses this idea to forewarn the immune system. A small amount or part of the organism that causes the infection is injected into the body so the immune system mounts a reaction against it to produce antibodies. When the person comes into contact with the real disease in the future, the immune system will recognise it and attack it with the antibodies, preventing infection.

There are two main types of vaccine: killed and live. Killed vaccines, such as the flu jab, use dead or inactivated organisms, which the body can still recognise as the disease causing invader but cannot cause the illness. Live, or attenuated, vaccines, such as MMR, contain organisms that have been weakened so they cannot cause disease in a healthy people. As a live vaccine is the closest thing to a natural infection it produces a strong immune response and often gives lifelong protection.

Vaccines and the risk of developing MS?

In the past there has been concern over the potential effect of vaccinations on the risk of people developing MS. Research has failed to find evidence to support these concerns.

In 2011, researchers reviewed previous studies on a range of vaccines. They found that the risk of developing MS remained unchanged after vaccinations for BCG (which causes tuberculosis), hepatitis B, influenza, MMR (measles, mumps, rubella), polio and typhoid fever. Their results suggested that diphtheria and tetanus vaccination may even be associated with a decreased risk of MS.

A US study from 2014 looked at the vaccination records of more than 4,500 people, with particular interest in hepatitis B and the human papillomavirus (HPV) vaccines. This found no increased risk of MS in the three years following vaccination.

A Scandinavian study published in January studied the records of almost 4 million women and found that the risk of MS was no greater in those who had had the HPV vaccination, which protects against cervical cancer, than in those who had not.

Do MS drugs affect how vaccines work?

photo of someone having a vaccination

A review of previous research looked at how the disease modifying drugs affected the effectiveness of the flu vaccine. For people on one of the four beta interferon drugs (Avonex, Betaferon, Extavia and Rebif) or teriflunomide (Aubagio) the vaccination protected them against flu. The evidence for natalizumab (Tysabri) was mixed with differing results from two trials. Small studies of glatiramer acetate (Copaxone) and fingolimod (Gilenya) suggested that the vaccine was less effective, though the numbers of people involved was too low to be certain. A more recent study of fingolimod found that almost half were protected by the flu vaccine compared to three quarters of people not taking the drug.

Should people with MS have vaccinations?

While there are rare complications with vaccinations, the risk of these occurring are the same for people with MS as in the general population. On the other hand, there is strong evidence that infections can worsen MS symptoms and increase the risk of a relapse.

There has been controversy around the use of the hepatitis B vaccine with occasional case reports of people experiencing symptoms or a relapse after the injection. This risk has not been seen in larger scale studies, which suggests that hepatitis B vaccination is probably safe for most people with MS.

In the vast majority of cases the benefits of vaccination greatly outweigh any risk and people with MS are encouraged to have any recommended vaccinations, such as the annual flu jab.
There are a few exceptions to this guidance. People who are experiencing a relapse may be advised to wait until this has passed before having a vaccination. Similarly, someone with an infection may need to wait until this has cleared up.

As there is a risk that a live vaccine may still cause symptoms or develop into the disease, these are generally not recommended for people with MS, particularly those on drugs that supress the immune system such as natalizumab (Tysabri) or steroids. If you are not sure if the vaccination you are being offered is live or not, talk to your doctor or your MS nurse.

References

Farez MF, Correale J.
Immunizations and risk of multiple sclerosis: systematic review and meta-analysis.
Journal of Neurology 2011;258(7):1197-1206.

Farez MF, Correale J.
Yellow fever vaccination and increased relapse rate in travelers with multiple sclerosis.
Archives of Neurology 2011;68(10):1267-1271

Langer-Gould A, et al.
Vaccines and the risk of multiple sclerosis and other central nervous system demyelinating diseases.
JAMA Neurology 2014;71(12):1506-1513.

Scheller NM, et al.
Quadrivalent HPV Vaccination and Risk of Multiple Sclerosis and Other Demyelinating Diseases of the Central Nervous System
JAMA 2015;313(1):54-61.

Pellegrino P, Carnovale C, Perrone V, et al.
Efficacy of vaccination against influenza in patients with multiple sclerosis: The role of concomitant therapies.
Vaccine 2014;32(37):4730-4735.

Kappos L, et al.
Randomized trial of vaccination in fingolimod-treated patients with multiple sclerosis.
Neurology 2015;84(9):872-879.

Coustans M, et al.
Demyelinating disease and hepatitis B vaccination: survey of 735 patients seen at an MS clinic.
Neurology 2000;54(suppl):A165-166.

Confavreaux C, et al.
Vaccinations and the risk of relapse in multiple sclerosis.
New England Journal of Medicine 2001;344:319-326.


This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

Anti-LINGO-1, biotin and phenytoin results reported at AAN 2015

1st May 2015 by Guest blogger

The 67th annual meeting of the American Academy of Neurology took place in Washington, April 18-25.  Pre-meeting media announcements created high expectations for several presentations at the meeting, particularly treatments which may promote remyelination and neuroprotection and potentially slow the build-up of disability.

The AAN meeting is a showcase for the latest developments in the neurosciences.  More than 500 presentations concerned multiple sclerosis alone, covering all areas of MS research.  Don’t forget that at this stage, the findings presented at the meeting have not yet been scrutinised by other scientists working in the same field.  When research is written up for publication in a scientific journal, the peer-review process allows other experts to examine data, criticise and maybe challenge conclusions made by the authors.

Progressive MS treatments

One of the most encouraging aspects of this year’s meeting was the sense that real progress is being made towards therapies which might provide neuroprotection and/or remyelination for progressive MS.

  • Anti-LINGO-1 (also known as BIIB1003)

Researchers reported the results of the RENEW clinical trial which was designed to detect whether treatment with anti-LINGO-1 would result in remyelination.  In this phase II clinical trial BIIB033 was compared to placebo in 82 people who’d recently had a first episode of optic neuritis (but did not have MS).  Participants received a total of six intravenous infusions of the drug or placebo every four weeks and were followed up for a total of 32 weeks.  BIIB033 was no better than placebo at improving vision, but researchers found that the time for a signal to travel from the retina of the eye to the brain (measured by visual evoked potentials) was improved slightly but statistically significantly in those who took BIIB033 – possible evidence that the myelin sheath around the optic nerve had indeed been repaired. [P7.202]

One observer at the meeting commented that the dose of anti-LINGO-1 was very high and might lead to significant side effects when taken long term, so this will need to be monitored in further clinical trials.

  • High dose biotin (also known as MD1003)

MD1003 is a highly concentrated formulation of biotin, one of the B-group vitamins (vitamin B7).  A phase III study recruited 144 people with secondary or primary progressive MS who were having increasing difficulty with walking and leg weakness. Participants took MD1003 or placebo for up to two years; approximately half of the participants in each group were also taking fampridine.  The main measure of the study was improvement in disability after 9 months of treatment which was still evident at 12 months.  Slightly less than 13% of the MD1003 group and none of the placebo group met this criteria. Further analyses showed evidence of a small decrease in the risk of MS progression; in the MD1003 group there was an average EDSS decrease of 0.03 at month 12, compared with an average increase of 0.13 in the placebo group.

There were no significant side effects although five participants taking MD1003 had “apparent hyperthyroidism”; this could have been caused by high levels of biotin in samples interfering with thyroid hormone blood tests. [PL2.002]

One question raised by other researchers is whether the improvements seen are the result of permanent improvement in MS due to remyelinaton or are temporary improvements in MS symptoms.  This could be tested by interrupting treatment – if the improvements remain then this would support remyelination, if improvements were lost, this would suggest that MD1003 is acting as a symptomatic treatment.

The doses being taken in the trial correspond to 10,000 times the recommended daily intake of biotin.   While biotin is available in supplement form, neurologists are warning that people should not start taking large quantities of biotin supplements which are manufactured to a lower quality than the pharmaceutical grade biotin used for this study.

  • Phenytoin

A phase II study at University College London involved 86 people with optic neuritis (but did not have multiple sclerosis).  Participants took either phenytoin or placebo for three months. Researchers measured the width of the retina – the layer of nerves at the back of the eyeball – at the start of the trial and after six months. Thinning of the retina is known to indicate damage to nerves elsewhere in the brain and spinal cord.

Results showed that the people taking phenytoin had about a third less damage to cells in the retina than was seen in the placebo group. There was no difference in measures of the quality of vision.

The researchers propose that these results suggest that phenytoin has a neuroprotective effect, protecting nerves from damage and potentially slowing the build-up of disability. Larger studies will be needed to confirm the results of this study. [PL2.005 no abstract on abstracts2view]

All of the abstracts from the meeting can be browsed on the AAN website.