This week, it’s Complementary Therapies Week and we’re sharing information and resources on a selection of different types of therapies available to people living with multiple sclerosis (MS).
If you’ve never heard of it, you might be wondering what APS therapy is and how it’s beneficial to people living with MS. Action Potential Simulation (APS) is a microcurrent sent from a machine into the human body, helping to encourage the body’s own healing mechanisms.
The electrodes are attached to the site where you experience pain, and the treatment is painless and considered safe.
Nigel previously used APS therapy at MS-UK's wellness centre and said, ‘I sampled APS Therapy when it was first offered at Josephs Court and after two sessions on my troubled right leg, the spasms I experienced daily disappeared. I was so impressed with the results that I bought my own machine so that I could use it at home more frequently for free. I did use APS therapy daily for a complete month and followed up with weekly sessions for the following six months. I now need to use it daily for April then drop back to once a week until I feel the need to use it more.’
People who have used this type of complementary therapy have noted that it has helped muscular pain, nerve pain, headaches, restless leg syndrome, chronic fatigue, insomnia and headaches.
You can find out more about how to access APS therapy by visiting Painfree Potential, where you can buy and hire machines to try at home.
To find discover more complementary therapies that may help with your MS, download your free Complementary and Other Therapies Choices booklet here
A healthy and balanced diet is essential for everyone, and as March is National Nutrition Month, we’re sharing how diet can affect multiple sclerosis (MS).
Many people use their diet to complement other therapies, and there’s no ‘one size fits all’ approach to managing MS. Typically, inflammatory foods are known to be a trigger to the gut and result in a sometimes unhealthy gut microbiome, which can worsen the symptoms of MS. Whilst inflammation generally is the body’s barrier against infection, for people living with MS, it can be painful and ongoing as the myelin neurons are incorrectly recognised as pathogens, thus the inflammation continues and oxidation results in damaged cells.
However, your food choices can impact the levels the inflammation and can be a way to control the way in which your gut reacts. Fruit, vegetables, oily fish, and nuts and seeds are great direct anti-inflammatory foods.
Several diets have been specifically designed for people living with MS. There’s the Overcoming MS (OMS) diet, The Swank Diet, the Wahls Protocol, and the Best Bet Diet, to name the most notable options.
The OMS Diet is one of the most popular amongst MSers that are using diet to help manage their health, and it follows a largely plant-based diet, with the addition of fish. It is built from the foundations of the Swank Diet, which encourages a low consumption of saturated fats. Kellie Baron reveals how the OMS Diet helped her MS after she was diagnosed with MS in 2013.
At the time Kellie was working part-time due to fatigue and other MS-related symptoms. Several relapses eventually led to diagnosis, by which time she had just discovered OMS through a random Google search of the exact words ‘Overcoming Multiple Sclerosis’. She attended Professor Jelinek’s one-day conference in Brighton in 2013 where she learned all about the OMS Recovery Program, and the science behind it, and adopted the recommendations immediately.
“The diet was a huge change because I was eating absolute rubbish before that, lots of meat, dairy and saturated fat,” she said. “But it was like a switch went on in my mind. I don’t miss the old way of eating. I’m cooking a lot now which I never used to do before, and I’m eating amazing food.”
Since adopting the OMS way of life, and choosing to take the disease modifying drug Copaxone, Kellie has remained relapse free and seen improvement in her general health. Her Expanded Disability Status Scale (EDSS) score has dropped from 2.5 down to 1, with blurry vision in one eye her only remaining symptom.
“I’m back at work full-time now, have had promotions, and I’ve run a triathlon and cycled 100 miles,” she said. “The fatigue has gone, the numbness has gone, and I’ve had no more relapses. It has made such a huge difference to my life.”
There are also similar stories like Kellie’s from followers of The Best Bet Diet and Wahls Protocol, but one thing they all have in common is reduced fat and clean eating.
For more detailed information about these MS diets you can download our free Choices booklet surrounding the topic of diet and supplements. Always consulting your GP, neurologist and MS nurse before making any changes to any disease modifying drugs.
Martin Baum had quite an eventful time when he went for his Covid-19 vaccination
Whenever talk of inoculation amongst my peer group of sexagenarians was mentioned – not as regularly as one would think, but often enough to make you think – the same questions would be asked – what vaccine did you have? And what happened after you had it?
Be it Pfizer or Oxford AstraZeneca, you take what you are given and try not to think of any possible side effects. My wife had the Pfizer jab which gave her a very achy and heavy arm for 24 hours. I got AstraZeneca. Despite warnings from the nurse administering the jab that I could experience a sore arm, fever, aches, pains and flu-like symptoms for up to three days, none of these, thankfully, applied to this MSer.
If this was an examination, then I aced it. I sailed through without fear of consequence from the AstraZeneca-filled syringe. I even got a ‘I have had my Covid vaccine’ sticker. However, what happened to me was not on the list of known side effects, in fact it wasn’t a side effect at all. In other words, what the nurse injects with the hand MS takes with the other, as I spectacularly took a fall trying to get out of my seat.
Muddled messages travelling from my brain to my legs are not an uncommon multiple sclerosis (MS) symptom for me. Myself and Lizzy, my wife/carer, are quite used to my legs failing to support my body weight. As she holds on to me in my struggle against gravity, my feet rhythmically flail like a freshly caught fish on a line. My knees buckle, I go into a controlled descent, excitement over. Easy.
It happens. Nothing to see here. We move on because we are in control. If we were any more in sync with each other then we would be on Britain’s Got Talent. But this time was different. We were in a hospital environment and the nurses were on me in a flash. Suddenly they were coming at us trying to stop a man in his 60s with a walking stick careering to the floor on their watch.
When this happens in public places, I go down not like a bag of wet cement, but calmly and casually, reassuring anyone gathering wanting to help not to panic. This happens all the time, but the nurses were not to know. How could they?
They were doing what nurses do, but because they rushed, bustling Lizzy aside in their hurry, their hasty reaction was my aftershock jab reaction. Although it would not make a dint on the Richter scale, the sudden activity shook me up for about an hour afterwards. Then it was over. Life returned to what it was before, albeit with a shot of vaccine in my system.
What happened to me after getting my jab was actually neither here nor there in the great scheme of things, inconsequential stacked up against the necessity to protect myself against Covid-19. If I could do it again I would in a heartbeat which, fortunately, I will do when I return for my second jab in the coming weeks.
We look at the connection between MS and Raynaud’s syndrome for Raynaud’s Awareness Month
Raynaud’s syndrome, also known as Raynaud’s disease, causes parts of the body to turn white and become very cold and numb in response to stress of cold temperature. It usually affects the fingers and toes, although it can also affect other areas.
There are two main types of Raynaud’s, primary and secondary. Primary tends to be quite mild, and doesn’t appear to occur as part of another medical condition.
Secondary Raynaud’s, also known as Raynaud’s phenomenon, occurs due to an underlying health condition. It’s less common but it can be more serious.
Multiple sclerosis (MS) is associated with secondary Raynaud’s. Medics think that MS can make blood vessels in your extremities to overreact to the cold, and you may experience Raynaud’s phenomenon.
For some people, emotional stress rather than the cold can trigger an attack.
How to treat Raynaud’s
Dress to keep the cold out. Wrap up really well before you go outside, and make sure your hands and feet are well insulated before you step out to prevent the cold air from reaching them.
Prepare your car before you set off on a drive by running the heater for a few minutes to warm up the air.
Hot food and drinks will keep you insulated from the inside.
For some people, taking food from the freezer or fridge can trigger an attack. Keep gloves nearby to use for this.
Keep your extremities warm at night by wearing socks and mittens in bed when it’s cold.
Exercising regularly is important to keep a healthy circulation.
Optic neuritis is a common symptom of MS that affects the eyes
Multiple sclerosis (MS) can present a huge range of symptoms and no two people’s experiences are the same. But one very common symptom is optic neuritis. This is when inflammation damages the optic nerve that transmits visual information from your eye to your brain. It can cause a temporary loss of vision in one eye, pain when you move your eyes, loss of colour vision, or seeing flashing lights when you move your eyes.
Around seven in ten people with MS will have optic neuritis at some point in their lives. Women are much more likely to experience it than men, and white people are affected more than any other ethnicity. The most common age to be affected is between 20 and 40 years old.
Some people experience optic neuritis as the first symptom of MS, while others may experience it in a later stage of the condition.
Although it is quite strongly associated with MS, not everyone who has optic neuritis will go on to get MS. For someone who experiences one episode of optic neuritis, the risk for getting MS is around 50 per cent.
An ophthalmologist or neurologist will diagnose optic neuritis. You may have blood tests and a test that measures how well your optic nerve is working called visual evoked potentials. It looks at how long your brain takes to react to a visual signal. They may also run an MRI scan on the optic nerve to check for inflammation.
In general, vision loss can get progressively worse over seven to 10 days. It will then begin improving between one and three months later. Thankfully, most people fully recover their vision.
Although optic neuritis is caused by MS, some other conditions can cause the optic nerve to inflame. These include infections or immune diseases such as lupus. A condition called neuromyelitis optica can also cause it, although this is rare.
Sometimes complications can arise from optic neuritis. There can be permanent optic nerve damage, although this damage might not necessarily cause symptoms. There can be a partial loss of vision or colour loss that becomes permanent, although most people regain normal or almost normal vision within a few months.
If you think you may have optic neuritis, make an appointment with your doctor.
Deborah Searson was diagnosed with multiple sclerosis during lockdown… She is sharing her story to help others who may find themselves in a similar situation
This is my story of how I became diagnosed with multiple sclerosis (MS) after the shock and realisation had set in, I realised life doesn’t stop and for me, the way through was to put into writing my experience with a little added humour.
I woke for work at 6am on a Spring Saturday morning in late April 2020, I stood and stumbled slightly, probably due to the few red wines I’d had the night before (or so I thought) I went back into the bedroom and stood in front of the mirror to put on a little makeup. As I stood there, I was trying to focus my eyes on my face and just couldn’t get a clear picture. How many wines did I have last night? My job involves me at times being in a senior role and that day was one of those, Great! I had no choice but to go in, with the Coronavirus very much part of my job, I had to go and make sure everything and everyone was OK. I only managed to stay an hour or so.
Once home I slept hoping when I woke up it would have resolved itself but it hadn’t. Whilst this was happening, we were in a full lockdown due to Coronavirus, I rang the eye clinic at a local hospital and asked if they could see me. What I’d noticed is that it seemed to be double vision I was having, where images were on top of one another not side by side and that it did return to normal if I closed one eye? They were unable to see me due to pressures at the hospital so I left it a few more days hoping that it would resolve by itself.
I eventually managed to get an eye examination at an Opticians but this was done at a social distance and they told me they thought that I may have Strabismus now to anyone that is not an optician, meant I had cross-eyes! What? How? Why have I never noticed this? They said I would need to wear a Prism on my glasses which would help restore normal vision, but they couldn’t give me one due to the pandemic.
A few more days passed and the double vision was starting to make me feel like a drunken sailor ready to walk the plank, I remember texting one of my friends who also works at the same place as me and they somehow managed to get me an eye clinic appointment (lifesaver literally).
So eventually, looking like an extra from Pirates of the Caribbean, with my eye patch on, secretly enjoying the daily fancy dress, I got an eye clinic appointment and, on the photos/scans they’d taken of my eyes, they said there seemed to be high pressure on the optic nerves and I would need a lumbar puncture. After which I was diagnosed with Idiopathic Intracranial Hypertension.
Over the following month, I began to feel worse by the day and in late May 2020, I was in and out of the hospital, sent home each time with what they thought was Gastroenteritis.
It wasn’t until I went for a follow-up eye clinic appointment in June 2020 the consultant brought up the latest MRI scan results showing I had extensive inflammation on the brain. I was kept in hospital and given steroids, it was here that the words multiple sclerosis were first spoken to me. In all honesty, I’ve worked in the medical profession for the last 15 years and I didn’t really know much about MS. The MS Society website helped me get to grips with it and reading other blogs made me feel less alone.
I have launched a blog and if anyone would like to read further about my journey with some humour added in you can visit, Youregettingonmylastnerve.co.uk
Frankie Washington and Dawn Langdon from the Royal Holloway, University of London discuss how the pandemic has led to people leading less healthy lifestyles
The Covid-19 pandemic has caused enormous disruption to our daily lives and there have been particular challenges for people with multiple sclerosis (MS). Staying safe and well is the most important thing and following all government Covid advice must be a priority for all of us. Keeping a focus on health and wellbeing is also important, and you can do this in several ways.
1. Managing your MS
With all the stress and restrictions of the pandemic, even keeping normal life going can be hard. But continuing to manage your MS well is still important. Although it might need more energy and persistence to get appointments and medication, it is very important that you manage your MS optimally, even in these difficult circumstances. Why not enlist a friend or relative to help with the phone calls or transport? Most people want to help, they just don’t always know how or when.
2. Physical activity
Survey data indicates that about half of people with MS have stopped or reduced their physical activity during the pandemic. Physical activity is important to maintain health and wellbeing. It is a good idea to put together a weekly plan for your physical activity, while following government Covid guidelines. Resources about physical activity for people with MS, including accessible exercises, can be found on our YouTube channel which you can go to by clicking HERE, and we also run exercise classes on Facebook Live twice a week which you can join in with from home. Click HERE to go to our Facebook page, give it a ‘like’, and you’ll get all the information you need. Click on the ‘videos’ tab to access all previous sessions, too.
It can be hard getting shopping and cooking organised in the Covid era, but diet also has a role in optimising your health and wellbeing. Unsurprisingly, in one survey a third of people reported gaining weight during the pandemic and this is also true of people with MS. In fact, there is evidence that people with MS eat much the same things as the rest of the population. But eating healthily is probably more important for people with MS.
A small uncontrolled study reported that people with MS who followed a low glycemic load diet, with support, experienced improvements in sleep, mood, anxiety, emotional health, and pain. Advice about healthy eating and managing your weight can be found in our Diet and Supplements Choices booklet HERE but in fact good general nutrition advice is the same for people with MS as the rest of the population. The NHS has some helpful advice on weight loss at https://www.nhs.uk/live-well/healthy-weight/start-the-nhs-weight-loss-plan/.
You might want to set up an online group, or you may already be in one, where you can meet up to prepare and eat healthy food, encouraging and supporting each other. Healthy doesn’t have to mean boring!
The COVID pandemic has affected the mental health and wellbeing of the general population, unsurprisingly given the restriction of activity and isolation that it has brought. It appears that this impact is more pronounced for people with MS. One study reported that compared with the general population, people with MS experienced more depressive symptoms, a worse sleep quality and perceived an increase in fatigue level, one of the most disabling symptoms of MS as you will know.
Sometimes a few simple steps can help to improve mood, and the NHS has got some good advice here https://www.nhs.uk/conditions/stress-anxiety-depression/improve-mental-wellbeing. There are ways of coping with stress that seem to work best. These are active strategies, such as
Why not devise a menu a coping menu of your own, to use when things get difficult. For example, talking things through with friends or relatives, taking a walk, doing an online yoga class, or tidying a cupboard.
If you feel that professional help is required, then contact your GP or MS Nurse. Many psychological therapy services are now working online, so you wouldn’t have to visit a hospital or clinic to get help.
Hopefully, you are not feeling too overwhelmed by Covid and this article has given you a few ideas to support your wellbeing. We are currently conducting a survey about living with MS in the Covid era. If you wanted to help us, you can participate via https://rhulpsychology.eu.qualtrics.com/jfe/form/SV_3FahObokk4tdwTX. It takes 15 minutes.
Frankie Washington is a graduate psychologist who is training to be a clinical psychologist. Dawn Langdon is Professor of Neuropsychology at Royal Holloway, University of London.
The theme for this year’s International Day of People with Disabilities is as unequivocal as it gets, ‘not all disabilities are visible’.
The message is not unique as anyone who is already aware of the Sunflower Lanyard scheme can confirm. But more than that, from a gradual decline in my own circumstances over the last year, I’ve noticed a change in the attitude I experience when I am out and about, and it is this. People are more aware. Kinder. And understanding.
Nowadays, my motor skills sometimes scrape the bottom of the multiple sclerosis (MS) barrel. Messages from the brain to my legs get embarrassingly confused and play merry hell with my centre of gravity. I have to confess that these days it is less than easy to walk a straight line without my feet taking me on a journey to the left or the right of the pavement, whether I want to go or not.
People still stare, sometimes. After all, it’s only human nature. But these days not in a way that makes me feel like I am an exhibit of P. T. Barnum’s circus. In restaurants or coffee shops my knees sometimes struggle to support my body weight when I try to rise from the table.
It’s not the most pleasant of experiences but it happens, of course, it does, but that’s when I endeavour to wrestle control over a situation where I have none at all. Because the MS is mine it’s up to me to reassure the crowd – and I do still have the ability to draw one – that everything is fine because this is not the first time it’s happened to me that day.
To carry an expectation – or even a grudge - against others for not understanding my sometimes muddled speech or incontinent thought process is not who I am. Or at least not anymore. Why make strangers feel uncomfortable? It’s nobody’s fault I have MS and I will tell whoever needs my reassurance that everything is under control. That everything is ‘cool’.
Being an MS blogger has put me in a position of MS privilege. I am at the coalface of disability activity. I am the embodiment of disability action. I no longer have the need to hide my disability behind my cabbage stalk walking stick. I wear my sunflower lanyard as a badge of honour.
I am Martin Baum. I am a proud MSer.
Head on over to the MS-UK Facebook page and like and share our posts for the International Day of People with Disabilities. Help us raise awareness of the hidden symptoms of MS - www.facebook.com/MultipleSclerosisUK/
We have been very busy on the MS-UK Helpline, not only answering all your calls, emails and web chats but writing new publications so you can be as informed as possible when it comes to managing your multiple sclerosis (MS).
Spasms and spasticity is a subject that you, the MS community, asked us to write about. Symptoms that are commonly experienced but not always really known what they are, what the difference is, or the many ways in which they can be managed.
This booklet will really help people to understand these symptoms, what causes them and the effects they can have. The booklet explains a variety of self-management techniques, as well as information on physiotherapy, different treatment options, complementary therapies and more.
We surveyed the MS community about how they deal with their spasms and/or spasticity and we had great feedback. Thank you to those who shared their experiences. We have included a number of quotes within the booklet which really help to bring it to life. We do this with all our booklets because we can all learn from other people’s experiences. What works for one person will almost certainly help another.
You can download our new booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.
To take a look at our full range of Choices booklets visit our website here. If you can’t find what you are looking for then please do contact our helpline and we will be happy to speak to you. We are here to provide unbiased information and professional support. We also provide emotional support should you just need someone to talk to.
We are here to help you to live a happier and healthier life.
Laura and Ryan
Nina Pearce discusses her journey since diagnosis
I know that my multiple sclerosis (MS) probably began when I was 30 and had just had my second child. I had optic neuritis, where there was a big blank splodge in the vision of one of my eyes. It got better with no treatment and no mention of MS. I thought I had had a stroke as the left side of my face was numb.
I wasn’t very sympathetically told I had MS, nor of any treatments. That was left to the fortunately much more understanding MS nurses who told me what type of MS I had and the treatment for pain and spasms I get.
I was OK for about three or four years, then my condition began to develop and my balance got much worse. My dominant left hand developed a tremor, so it was a relief that I retired from teaching in 2014 as I couldn’t write any more – marking books was out of the question.
I used to play the piano, organ, violin, trombone and guitar, but even playing the organ in church can no longer happen. Fortunately my husband retired as a vicar so we moved permanently to the bungalow we bought when I was still teaching. We are in a new area and I don’t have to make a mess of the music in church any more.
I have found MS-UK invaluable for support and help. In spite of COVID, the online gym sessions and the classes such as seated yoga are immensely enjoyable and I would suggest that anyone should take part. If you look on their YouTube channel here you may find more activities to join in with.
My mum has had relapsing remitting MS for about 60 years and counting. She refuses to use a rollator and begrudgingly uses one stick. I grew up having to do more in the home than many of my friends, something I tried to tell my children about as they were growing up!
I need my rollator in the home and to get to the car, or my new mobility scooter and not forgetting my tricycle. We have completed 1,200 miles so far this year. I cannot balance on an ordinary bike anymore. My husband helps push me up the more steep hills, and we try to do four and a half miles a day.
We look after our youngest granddaughter one day a week and I’m very glad that the government has said grandparents can do childcare. This has meant that we can also be on hand to pick up any of our other grandchildren from school, which we enjoy a great deal.