The MS-UK Helpline team have been working really hard to answer all of your questions around how coronavirus will affect your multiple sclerosis (MS). Here are some of your frequently asked questions answered.
I’m taking a disease-modifying drug for my MS, does this leave my immune system compromised?
The answer to this question depends on which MS drug you are taking. Some will leave you with a weakened immune system and others won’t. The MS Society published some useful guidance on which drugs leave you most susceptible. Click here to read more. For more information about coronavirus and disease-modifying therapies in MS the Association of British Neurologists (ABN) has also released some guidance.
I have MS but do not take any immunosuppressant drugs, how will coronavirus affect me?
For the first time yesterday, the PM announced that people with MS should be practising social distancing. Social distancing encourages those that can to work from home, avoid large public gatherings and public transport, and avoid anyone displaying symptoms. Click here for more information.
Someone in my house is living with multiple sclerosis. What can I do to protect them?
You can also practise social distancing with them to reduce your chances of contracting the virus and bringing it home. Taking it one step further, the person living with MS in your house could self isolate in one room away from the rest of the household to further limit their chances of contracting the virus. Click here to see the guidance on social distancing and self-isolation.
For the latest information on coronavirus, visit www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response.
We have received some calls to our helpline about the recent news of COVID-19 and concerns about the impact it may have for people with multiple sclerosis (MS).
There is limited information and advice available specifically relating to MS. If you have MS, the risk of developing the virus is the same as the general population. This risk is currently considered low in the UK.
Generally, this virus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease. Having MS does not mean your immune system is weakened.
However, some disease modifying drugs supress the immune system. These include Lemtrada, Ocrevus, Tysabri, Mavenclad and Gilenya. A side effect of these drugs is increased risk of infection.
Professor Gavin Giovannoni has written a blog post for the Barts MS blog which talks about the risk factors of these drugs in more detail. You can read more here:
https://multiple-sclerosis-research.org/2020/03/covid-19-and-dmts/
As with other health issues, such as flu, cold, bladder infection, or any other viral issues, you can have a temporary worsening of your MS symptoms. Symptoms will likely settle down once you have recovered from the infection/virus.
Any concerns, we would suggest speaking with your MS team. As things stand it is not being recommended to stop and DMT treatment – always speak to a health professional in the first instance.
To avoid catching or spreading the virus, the advice from the NHS is as follows:
Do
Don't
If you would like to chat through any concerns our helpline is available Monday to Friday, 9am – 5pm. Call 0800 783 0518.
The Helpline team
This symptom is highly prevalent among people living with multiple sclerosis
Restless leg syndrome, also called Willis-Ekbom Disease, is described as an unpleasant or uncomfortable sensation in the legs along with an irresistible urge to move them. Symptoms can be described as aches, a feeling of pulling, itching or a sensation of bugs under the skin, tingling, tightness and electrical or jolting sensations. These symptoms commonly occur in the late afternoon or evening and tend to be more severe at night when you’re resting, such as sitting or lying in bed.
The condition can be disruptive to sleep and contribute to the overall fatigue, another common symptom that affects people with multiple sclerosis (MS).
Restless leg syndrome is thought to be highly prevalent among MS patients. One study, published in the journal PubMed revealed that among 156 MS patients, 51% met the criteria for restless leg syndrome based on neurological examination and medical interview.
What causes restless leg syndrome?
Research has identified specific genes related to restless legs syndrome, and it can run in families. According to NHS guidelines symptoms usually occur before the age of 40 in these cases.
There is also evidence to suggest restless leg syndrome is related to a problem with a part of the brain called basal ganglia, which uses a chemical (neurotransmitter) called dopamine to help control muscle activity and movement.
Dopamine and restless legs
Dopamine acts as a messenger between the brain and the nervous system to help the brain regulate and co-ordinate movement. If nerve cells become damaged, the amount of dopamine in the brain is reduced, which causes muscle spasms and involuntary movements.
Dopamine levels naturally fall towards the end of the day, which may explain why the symptoms of restless legs syndrome are often worse in the evening and during the night.
Restless leg syndrome can be a secondary condition that can occur as the result of a long term condition such as MS, but also if you have an iron deficiency. Low levels of iron in the blood can lead to a fall in dopamine, with can trigger restless legs.
In MSers restless leg syndrome can be related to abnormalities in neurotransmitters which help regulate muscle movements or the part of the central nervous system that controls automatic movements.
Treatment for restless legs
In the first instance, it is recommended that you should avoid caffeine, alcohol and nicotine, which are all thought to be triggers.
Regular daily exercise and a good sleep routine are also suggested treatments.
During a flare, you can try massaging your legs or taking a hot bath. Applying a hot or cold compress to your leg muscles, taking your mind off it by doing different activities to keep busy, such as reading or watching television. Relaxing exercises such as yoga and tai chi, or walking and stretching can also help provide relief.
Alternatively, there are a number of drugs that can be prescribed to help treat this unwanted symptom, such as Neurontin (gabapentin). This drug is used to treat neuropathic pain, a common symptom in people living with MS.
Benzodiazepines or benzodiazepine agonists, such as Valium (diazepam) and Klonopin (clonazepam) have been used with success in the past, but there is a risk that they can worsen fatigue. These particular drugs are used as a short term treatment because they can become addictive.
There are also medications that can increase dopamine in the brain, such as Requip (ropinirole) and Mirapex (pramipexole). If you are experiencing symptoms it is best to visit your GP or MS nurse who will be able to advise and treat you accordingly.
Multiple sclerosis blogger and influencer Martin Baum reflects on life with MS
There’s little doubt that much has changed since I was first diagnosed with multiple sclerosis (MS) back in the 80s. Today there’s more information, recognition and understanding but what does that really mean to any newly diagnosed young person? Well, if my journey through an illness with more twists and turns than the Hampton Court maze is anything to go by, not a lot.
What I still remember at the inception of diagnosis was how my mother, with the best of intentions, inadvertently began the process of putting my life on hold. She was always concerned about what might happen. My aunt, her sister, had MS. She was in a wheelchair which only added to the fear of an uncertain future for her son.
A negative ‘what if’ mindset was being formed and it was scary. Yet despite all her worst-case scenarios it took over thirty years for me to reach the secondary progressive stage of MS and writing this blog, has given me pause for thought all these years on.
A fundamental issue I have with MS is that it’s easy to forget what we can still ‘do’ and what we are able to achieve. The older we get the harder it can be to get on with life because sometimes MS makes simple tasks more difficult. But as far as it goes, the newly diagnosed youngster needs to be reminded that they are still essentially the same person as they were before being labelled.
There’s a line from Tashauna, a song by the Rossington Collins Band that goes ‘if you believe that you are weak, then weak you'll surely be’. A friend played me the song years ago at a time I was struggling with my diagnosis – it wasn’t the first time and it wasn’t to be the last where I felt I was out of my depth - but that lyric has stayed with me almost as long MS has.
Just because the worst-case could happen, it doesn’t necessarily mean that it will. Having MS is like climbing Mount Everest. Not everyone reaches the summit. For others who are at relapsing remitting, secondary progressive and primary progressive base camps it’s anyone’s guess how far up the mountain they’ll ascend. But until then, until you get there or if you get there, the only advice I would offer to any young person is this – it’s better to live a life, not MS.
MS-UK Counsellor Rachel Murray reflects on the uncertainty of living with multiple sclerosis
We travel through life with varying degrees of and awareness of uncertainty. We like it when we feel certain - it feels safe - and we don’t like the anxiety and fear that uncertainty can bring – for many of us it feels scary and unsafe.
A diagnosis of multiple sclerosis (MS) and living with MS increases the uncertainty experience! Symptoms can be unpredictable and may or may not be connected to MS. Never knowing when a relapse may come along can be daunting, uncertainty about treatment options and their uncertain long and short term effects, uncertainty about MS in workplaces, MS in family life, and MS in the future. All of these are thought about through the lens of uncertainty and may frighten and worry us.
Living with uncertainty as a constant companion can be exhausting and frightening but what if the lens is changed so that uncertainty is viewed as an adventure, as a path we did not expect to be on but as we are… then let’s see what’s around the next corner and make the most of the journey anyway. What if uncertainty becomes openness with curiosity and a willingness to see what unfolds. What if we start to welcome and embrace uncertainty because it opens up a different experience and viewpoint?
What if you meet the challenge of processing and experiencing the journey with MS by choosing the lens of adventure and curiosity over the lens of uncertainty? You may find yourself being surprised along the way.
“Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious ambiguity.” — Gilda Radner
To find out more about MS-UK Counselling or sign up, visit www.ms-uk.org/counselling.
MS Clinical Nurse Practitioner Miranda Olding reveals the different treatment options for this common MS symptom
Spasticity, otherwise known as a tightening or stiffness of the muscle, is due to increased muscle tone and exaggerated response to muscle stretch. It is a common multiple sclerosis (MS) symptom and can affect the way we function, such as walking and posture. In addition, it can increase fatigue and cause pain. Unmanaged, it can lead to permanently shortened muscles called contractures and can affect daily living.
Spasticity also refers to involuntary muscle contractions or sudden movements, which range from a mild feeling of tightness, to severe, painful spasms, often of the legs. Here we focus on the problem of constant stiffness.
Treatment of spasticity is ideally done with the person with MS at the centre of a multidisciplinary team, with neuro physiotherapist, occupational therapist (OT), MS nurse, any relevant consultant, and possibly wheelchair services all liaising with each other.
The first thing to be aware of is that anything that is bothering the body can trigger or exacerbate spasticity in MS, so before medication, these 'trigger factors' need to be dealt with. They include, but are not limited to, infection, constipation, urinary retention, sore skin or pressure areas, anything that pinches, rubs or chafes, increased emotional stress and pain.
Muscle relaxant medication
The key with all muscle relaxants is to start low and go slow. You can even cut tablets in half with a tablet cutter from a pharmacy and start with a smaller dose. The idea is that by gradually increasing it every few days, you find a dose which reduces the problem, without causing too many side effects. The first people usually try is baclofen, and the most common side effects are drowsiness, or feeling weak. Because MS involves both stiffness and weakness in the muscles, you can find that a degree of stiffness is needed to maintain the strength needed for standing, so it can be a fine balance.
NICE guidelines recommend gabapentin as the next treatment to try if baclofen is not right for you. This is often used for nerve pain in MS, but also has a muscle relaxant effect. However, some people find the sedating side effects, or the fact that they are putting on weight, too difficult.
Another muscle relaxant that can be tried, which is less sedating, is tizanidine. But you will need a blood test before and for the first three months of treatment to check that your liver is coping and is not being harmed.
Occasionally, an older muscle relaxant, dantrolene, is tried. Diazepam (valium) is also effective as a short term muscle relaxant, but it is easy to become dependent on this. Clonazepam can also be tried.
When just a couple of defined muscles are causing the problems, botulinum toxin (botox) can be very effective when injected to paralyze these muscles. This needs to be repeated around every three months.
Cannabinoids
There has been evidence for some time that components of the cannabis plant can help some people with MS spasticity and pain. Sativex, the cannabis-derived medicine, is licensed to treat spasticity in people with MS, and is now available on NHS prescription from a specialist doctor, so speak to your neurologist or MS nurse to find out more. It is still illegal to possess this drug if you do not have a prescription.
CBD oil is a cannabis-based product that contains none of the psychoactive component, TCH, and so is legal for anyone to use. In studies where there was evidence of effectiveness, doses ranged from 0.8 to 1.8mg, taken between 2-4 times per day. The easiest way to control the dose is to take it in liquid form, and start with one drop under the tongue, then increase as necessary.
If other medications aren’t proving effective, a referral can be made to be seen in a specialist spasticity clinic, where a baclofen pump can be considered. This involves a tiny dose of baclofen being delivered straight to the spinal column via a small plastic tube, fitted to a pump, about the size of a shoe polish tin, which is inserted just under the skin in the abdomen. As the dose is so small, people have a lot less side effects than with tablets.
Posture
The way that you sit and lie in bed is important to break up the pattern of tight muscles with MS spasticity. However, this is something a physio or occupational therapists (OTs) can help with. OTs can also assist with night time splints to stretch out hands that have become very tight and to help ensure that all seating and equipment is supportive.
Keeping a full range of motion is important. Start by seeing a neuro-physio, and then keep things going with exercise. Everybody should be able to do some exercise or stretching, whether this is attending a regular exercise or yoga class, using regular or assisted gym equipment, including from a wheelchair, or even just passive stretching with a helper. A resource for this, 'Stretching with a helper' can be downloaded here https://bit.ly/2rrqHFu
Exercise not only helps to stretch out tight muscles, but also to reduce spasticity and spasm, boost fitness and lift mood.
It is World Mental Health Day and in this guest blog, Julie tells us why she took years to come to terms with her diagnosis of MS and how MS-UK Counselling has helped her…
‘To this day I struggle to think about the day I was given the news of my diagnosis. Unfortunately, it was dealt with dreadfully. I was on my own and not prepared at all. The consultant showed me my MRI scan and quite bluntly said the only thing she could think was that it was MS. I could barely breathe but knew I had to try to listen so as not to miss any information. She asked me what I was doing later that afternoon and I replied that I was due to go on holiday with my husband and daughter. She said: ‘Have a good time and try not to think about it too much.’ I couldn't believe what I was hearing, the sheer insensitivity. It took me years to accept my diagnosis and to learn to accept it.’
My diagnosis
‘I first noticed something was wrong around 2009 whilst on a charity walk. After around 40 minutes my right foot felt wobbly and slapped the ground. I didn't take much notice and for the next few years, nothing changed much until one day when I was meeting a friend in town. I parked a way out and by the time I got to the centre my right leg really ached and I couldn't control my foot. I made an appointment with my GP who couldn't find anything much but referred me for physiotherapy. Physio had no effect and when I described the symptoms of weakness, a tickling sensation and pins and needles I was referred for an MRI of my spine. This came back as normal but the consultant decided I should have further imaging of my head and neck and it was this scan that showed the lesions.’
Counselling
‘One day, my MS nurse pointed out that every year I bring up the bad experience I had when I was diagnosed, and maybe I should consider some counselling.
‘I had no reservations about accepting help and found it a relief to talk to my counsellor. My first session was comforting and I felt listened to and cared for. I felt I mattered.
‘The service has helped immensely. I have discovered I am actually stronger than I thought and have learned coping mechanisms for the times that are tricky.
‘I would say to anybody struggling emotionally not to wait as I did and to seek help. It is available, and any good GP will help, or you can self-refer. The good thing about the MS-UK Counselling service is that the people have knowledge of the disease which makes a huge difference.
‘I have also found exercise and meditation hugely beneficial in helping with anxiety.’
About MS-UK Counselling
MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.
Register online today or call us on 01206 226500 to find out more.
MS-UK was invited to attend a medicinal cannabis event in London on Monday 16 September. The event was set up and facilitated by Medical Choices UK a non-profit medicinal cannabis and education organisation. Its mission is ‘to help bring medicinal cannabis to those who need it by educating those who can prescribe it and lobbying those who can improve access’. MS-UK’s Helpline and Information Officer, Ryan Jones and Head of Services Diana Crowe went along to find out more.
The event gave information on:
Amongst the very knowledgeable and experienced presenters was Dr Julie Moltke who qualified as a Doctor at Copenhagen University of Medicine and studied in both Stockholm and Paris. She has a strong holistic approach, a passion for mental health and is a certified yoga and mindfulness teacher. She has set up an online magazine-style website called ‘dosage’. As part of her work Julie is currently travelling the world and exploring the cannabis industry.
After the event, Ryan said, “One of the things that I took away from Julie’s presentation was to dispel the common myth that Cannabidiol (CBD) is not psychoactive. Julie said that CBD still has an effect on the brain, so is therefore psychoactive, but is best described as ‘non-intoxicating’. That makes a lot of sense and has cleared up a misconception that I held”.
We also heard from a Director of Medical Choices UK Michael Platt who is an anaesthetics and pain medicine specialist based in London. He has been a consultant and honorary senior lecturer in pain medicine and anaesthetics since 1991. He recently became the medical director at Sapphire Medical Clinics, a new clinic for medicinal cannabis. He gave a good round-up of the current evidence and data available relating to medicinal cannabis and spoke passionately about being pleased that he now has another ‘tool’ to treat pain.
Most interestingly, we also heard from Jason Jordan from Perth, Western Australia, who lives with primary progressive MS and is a medicinal cannabis advocate. Jason was the first person in Australia to have been prescribed medicinal cannabis and he described its effect on his quality of life as a ‘game-changer’. He was quite explicit about the fact that he was not a recreational cannabis user and that he had been able to manage his symptoms so much better since receiving his prescription.
Both Diana and Ryan both came away from the event feeling more informed and a little clearer about how medicinal cannabis can be accessed here in the UK.
For more information about cannabis and MS download our Choices leaflet here.
A new toolkit has been developed to help local health groups improve services for people living with progressive neurological conditions in England. The MS Trust was one of seven charities involved in developing the new guidance.Healthcare services have been failing people with neurological conditions like multiple sclerosis (MS) for far too long. That’s a fact. The number of people living with neurological conditions in England is rising and will continue to increase. But, for a number of years now, neurology has not been a national priority for the NHS. Research shows that those living with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neuro-specialist rehab and reablement and a lack of psycho–social support.
This inequality is simply not fair.
The NHS RightCare Toolkit for Progressive Neurological Conditions has been developed to help change that and ensure people living with brain and nerve conditions like MS, Parkinson’s and Motor Neurone Disease (MND) get the care and support they need and deserve.
Seven charities (MS Trust, MS Society, Parkinson’s UK, MND Association, Sue Ryder, MSA Trust and PSP Association) joined forces with NHS experts to produce the toolkit. The hope is that Clinical Commissioning Groups (CCGs) will take full advantage of this unique opportunity; that they will use the practical, clear and innovative guidance the toolkit provides to tackle some of the big challenges people with these conditions face and ultimately improve healthcare services for this group, now and in the future.
If implemented in the right way, the numbers speak for themselves: up to 2,500 emergency admissions to hospital a year could be avoided for patients with these conditions as a result, with up to £10 million freed up to fund improved services.
So what does this mean for people with MS? The toolkit outlines four priorities that need addressing in MS care: improving the efficiency of disease modifying drug management, better use of data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS, and more MS specialists from different areas working together to provide joined-up care.
MS health professionals do an incredible job with the resources at their disposal and we know that many services are already delivering high quality care - the toolkit has real-life examples of best practice from across the country. But we want to help all areas reach the same high standard and make this best practice a reality for all. We will work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.
This blog has kindly been written by the MS Trust. To find out more about them visit the MS Trust website or if you’re living with MS and would like to share your experiences of healthcare, please get in touch with the MS Trust at comms@mstrust.org.uk.
Multiple sclerosis is an inflammatory condition. Here MSer and Nutrition Scientist Sharon Peck highlights just some foods that could help reduce inflammation... Inflammation is essential to our survival. It’s our first line of defence against the outside world. It attracts cells of the immune system to the site of danger to destroy pathogens and helps heal injury. As a short-lived response it performs excellently as protector and healer.
In multiple sclerosis (MS) inflammation is ongoing (chronic), with the myelin covering being attached by neurons wrongly identified as pathogens. The immune system attacks pathogens with oxidation. The oxidative damage causes further inflammation.
An unhealthy gut microbiome can be a source of inflammation. Boston researchers found MSer’s microbiome linked to ongoing inflammation. Luckily the microbiome is easily changed with food choices that nourish the microbiome.
Foods described below can have anti-inflammatory effects, either directly helping to resolve inflammation/oxidative stress, or indirectly by feeding our microbiome so anti-inflammatory microbes crowd out pro-inflammatory ones.
Champion foods (both direct and indirect effect)
1. Vegetables
Particularly rich dark, leafy greens contain polyphenols and antioxidants, which can directly reduce inflammation. Vegetable’s high fibre content feeds the microbiome. A small Italian trial found a high vegetable diet reduced inflammation, improved gut microbiome and helping to improve overall health.
2. Fruits
Especially deeply coloured berries, which are potent antioxidants that can reduce inflammation. They also provide food for the microbiome, helping to keep your gut healthy. Try and make sure you are getting your 5-a-day, and aim for 10 if you can, after the NHS recently reported that 10 portions of fruit and vegetables is even better for us.
Direct anti-inflammatory/antioxidant
3. Oily fish
Mackerel, salmon and sardines are all sources of essential fatty acids (EFAs) omega-3s, which UK researcher found increased anti-inflammatory bacteria in the microbiome and may help directly resolve inflammation.
4. Nuts
These are a source of required omega-6 EFA, which can be inflammatory in excess. Walnuts have a balance of omega-6 and omega-3, and research has shown they promote anti-inflammatory microbes. Research found that walnut oil reduced inflammation in a mouse model of MS.
5. Seeds
Another great source of EFAs. Some seeds, such as flax and chia seeds have a high anti-inflammatory omega-3 content.
6. Extra-virgin olive oil
Extra-virgin olive oil is a source of antioxidant vitamin E and anti-inflammatory polyphenols. A review of multiple trials indicated that this oil could improve inflammatory disease symptoms.
7. Ginger
Ginger has well known anti-inflammatory properties. An Iranian researcher indicated it may reduce inflammation in mice with experimental autoimmune encephalomyelitis (EAE).
8. Turmeric
It’s been in the news a lot recently and is now well known for its anti-inflammatory properties, but it has poor absorption. Consume it with healthy fats and black pepper to improve the absorption.
Indirect effect via the microbiota
9. Legumes and wholegrains
Another good source of fibre which has been found to benefit gut microbiota.
Out of the above list seven constitute the Mediterranean diet. Interestingly, the Mediterranean diet is very similar to the high vegetable diet used in the Italian study mentioned in point one. It showed an anti-inflammatory effect in MSers and reduced disability. The anti-inflammatory Mediterranean diet is being looked at by a variety of experts and particularly for people with MS.
About Sharon
Sharon was diagnosed with multiple sclerosis in 2007 and prompted a career change to nutrition with the goal of empowering people to take positive steps toward feeling better. Sharon aims to share her nutritional knowledge, the latest nutritional and lifestyle research and expertise from healthcare professionals. Visit Sharon’s website for more information about her and her latest articles.
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