Everyone with a diagnosis of multiple sclerosis (MS) in the UK should have access to an MS nurse, but sometimes patients do not know what they should contact them about or the support they can offer. Sometimes they just don’t want to be a bother, but actually, your MS nurse should be your first point of contact if there are any changes in your MS and you’re not bothering them, it’s their job.
What does an MS nurse do?
MS specialist nurses are trained to offer direct support and clinical advice. They can also refer you to other services such as physiotherapy, occupational therapy, counselling and urology to name a few.
How often should I see my MS nurse?
How often you see your MS nurse will depend on how active your MS is. MS patients should see or have a telephone appointment with their MS nurse at least once a year or every 6 months, but if your MS is more active or you are taking a disease-modifying therapy you will see them more often. Even if there has been no change to your condition since the last time you spoke it’s important to just check-in and document that on your records. It is also a good opportunity for your MS nurse to share any recent developments in the world of MS and anything new that might be of help to you.
Tip: Between appointments keep a list of questions you want to ask. Sometimes you may have lots of questions you want to ask and when the appointment finally comes around, you forget what we wanted to ask. Alternatively, you can download this free helpful list of suggested questions, which might help get you started.
I don’t have an MS nurse, how do I get one?
If you do not have an MS nurse or perhaps you’ve not engaged in a while and need to get back in touch, the MS Trust offers a map, detailing all the MS nurses in the country and how to get in touch with them. Click here to visit the map and find your MS nurse.
Multiple sclerosis (MS) can present an array of symptoms, including muscular and nerve pain, spasticity, and muscle tension. Reflexology is a complementary therapy that many people living with MS have used, and most benefits are often seen after multiple sessions.
Notable benefits of reflexology include a reduction in tension, improved circulation, along with relaxation, thus a reduction in stress levels. Some MS patients have reported improved bowel function after trying reflexology, and sessions can be tailored to individual’s needs and specific areas of pain.
Nigel tried reflexology with MS-UK and said, ‘I first sampled reflexology when I was offered it as a complementary therapy at the wellness centre. As I had no previous experience I agreed and over a period of nine months I began to get feeling back in my right foot. Combined with the use of Functional Electrical Stimulation (FES) for my foot drop, I developed better control in my walking – a point noticed by Andrea Tavner, who has previously hosted hand reflexology sessions for MS-UK Online. It is hoped I can resume reflexology soon.’ You can find a sample set of guidelines for hand reflexology by Andrea here.
Reflexology may seem similar to massage, however there are some key differences. Massage focuses on larger muscle area, with large movements typically with the whole hand to treat a wider area, such as the back, shoulders, or calf muscles for example. Reflexology uses smaller movements with the fingers and thumbs on a specific area, promoting healing in the areas treated.
Considered a complementary therapy, reflexology is non-medicated and requires an accredited practitioner to deliver the treatment. It is worth consulting with a local practitioner and considering the cost of this complementary therapy as multiple sessions may be required.
You can find out more about the different types of complementary therapies available by downloading our Choices booklet here.
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.
Australia resident Jason Jordan was finding life with primary progressive multiple sclerosis very difficult until his neurologist suggested he try medical cannabis
Looking back, I can tell now that I probably had primary progressive multiple sclerosis (PPMS) from at least the age of 21. It wasn't diagnosed until I was 40 but, in retrospect, many of the strange ‘illnesses’ I had experienced weren't ‘viruses’ or ‘ear infections’ as my doctor would always claim. I’d experienced things like a lack of balance, clumsiness, flat footedness and short-term memory issues.
One day, half of my face went numb and droopy. But it wasn't until the double-vision kicked in that I really got concerned. I had been working in IT for years. At that point, I was a very early adopter of having two large screens. One afternoon, my eyes would not lock back into stereo vision. Instead I had two separate vision streams. It took a good 20 minutes for it to become normal again.
So I jumped on Dr Google and worked out it was most likely MS. My GP wasn't so sure. But the neurologist identified a problem as soon as I walked in, managed to get me straight into an MRI, and was able to get me started on treatment within 48 hours.
Whilst I had read up on what MS is and what it was likely to do to me, like a lot of men, I felt bullet-proof. I'd been having all sorts of minor symptoms but I still believed disability would never happen to me. But it did, of course. Incredibly slowly at first, but it accelerated. So early on, I totally under-estimated where MS would take me. And for a long time I didn't deal very well with the symptoms. My mental self-image is of a passionate, capable, ambitious high-achiever – so you can imagine what the progression did to my mood and my demeanour.
By the age of 40, my wife and I had built quite a large technology company, but the progression of my MS was making it exceptionally difficult for me to live up to my responsibilities and deliver on the promises I had made. Confusion, cognitive problems, logic issues, memory gaps and fatigue meant I either had to stop being the Managing Director or the business was going to fall apart. So we were forced to sell. In retrospect, it was for the best as the technology support market has since died, but at the time it was soul-destroying as up until that point in time, I had defined myself by what I do.
By 2016, I had been on virtually every medication available for MS. The best any of them were able to offer was to slow down the progression of the disease, but until Ocrevus, I'm not sure any of them did. Certainly none of them treated the symptoms. For that, I was given opioids, antidepressants and other toxic, synthetic drugs that made me feel terrible.
Out of hope
In early 2017, my neurologist told me that we were out of options. He forewarned me that I was likely to be using a wheelchair in a matter of months. Then he said to me that we could try a new legal option – medical cannabis. I had been brought up my entire life to reject cannabis as a gateway drug with no medicinal value, but I had no other choice.
By the time I started on medical cannabis, I was using a walking stick, beginning to be incontinent, and having difficulty finding my words and then pronouncing them. I had terrible pain in my toes, fingers and cheekbones and the numbness and burning had grown from my feet to my sternum. I was often quite confused, and I was angry, frustrated and depressed.
I was so very fortunate to have a neurologist who cared enough to investigate all available options. A progressive, educated professor who knew that once the conventional options had been exhausted, the fight still needed to continue. He gave me an option. He told me to research it and then supported me in the convoluted process of getting a prescription. He was not scared of peer group pressure. He put the patient first and for that I am eternally grateful.
Since having medical cannabis, I am 80 per cent back to normal. I will never again be 100 per cent as my brain is physically damaged. There are many, many large lesions in both my brain and spinal cord, and medical cannabis does not have any repair effect on those. But it does have a massive effect of the majority of my symptoms. I have weaned off five of my seven daily medications. I no longer take Oxycontin, Baclofen, Sertraline or Pregabalin and I avoid taking Seroquel unless I have to. I still need Pramipexole, a Parkinson's-type of medication that stops the shakes I get of an evening, but I feel so much better as a result of not having to take so many medications. My anxiety is massively reduced from not knowing what effect the potential interactions of so many drugs have.
I take a relatively large quantity of legal medical cannabis oil every day, prescribed by my doctor. The benefits have, for me, been amazing. I no longer use my walking stick. I have balance and leg strength. I no longer have any pain whatsoever. My cramps and spasms are about 10 per cent of what they were. My memory is at least 80 per cent improved. Whilst I still have the occasional urgent need to get to a bathroom, it's no longer a ‘problem’. I am back to being the person I imagine that I am. I feel alive.
This is not a miracle drug or a panacea, but seeing as though it's legal here in Australia and has so few side-effects for me it's worth trying. It's been so good for me, I felt I had a responsibility to let other people know about it. I now apply most of my free time to being a patient advocate. I tell medical professionals like doctors, nurses, pharmacists and scientists about my experience, and I also talk to other patients and their carers about trying it. If it helps just one more person, I'm doing good work.
Is it legal?
In the UK, a drug called Sativex is licenced to treat muscle spasms and stiffness in MS, which is taken by mouth as a spray. The main issue with Sativex is accessibility as it can prove tricky to get as many doctors aren't keen to prescribe it. It is available via private prescription from a doctor. This can work out expensive, around £500 a month. Speak to your GP or neurologist about the possibility of trying this treatment.
Naltrexone is a drug developed initially to treat addiction to opiate-based drugs, such as heroin or morphine. It belongs to a class of medications called opiate antagonists.
When given at a much lower dose, it’s known as low-dose naltrexone (LDN) and has been used in the US to help with autoimmune conditions including multiple sclerosis (MS) since 1985. More recently, it’s been used in the UK and Europe.
How does naltrexone work?
Naltrexone is thought to work by inhibiting the body’s natural painkillers, called endorphins, which makes the body produce even more. People then feel an increased sense of wellbeing and reduced pain. The increased endorphins then act with the receptors to help regulate cell growth and immunity.
Can I get LDN for MS?
LDN can be prescribed for MS, but it is ‘off-label’, which means it is not what it is licensed for. This makes a lot of doctors unwilling to prescribe it. It is also known to help with symptoms of conditions like Crohn’s disease, fibromyalgia, ulcerative colitis and chronic fatigue syndrome.
Studies that have looked into treating MS with LDN have had mixed results, but there is a lot of anecdotal evidence that it improves symptoms like pain, spasticity, fatigue and depression.
Can I get LDN in the UK?
It’s tricky – most GPs will not prescribe LDN for MS because the National Institute of Health & Care Excellence (NICE) does not widely recommend it for this condition. However, some people pay privately to access it.
If you are unable to obtain an NHS prescription from your GP, your GP may be willing to write you a private prescription but will make a charge. You could also get in touch with a private specialist practice or one of the online GP services. You will be likely to be asked to provide them with a letter from your GP or neurologist confirming that you have MS, a summary of your medical history, including any other conditions you live with, and any existing medication you take.
The LDN Research Trust has a lot of helpful information on getting a prescription, and a list of practitioners who will prescribe the drug. Visit their website here ldnresearchtrust.org/
For more information about LDN you can download MS-UK’s LDN Choices booklet free
Early summer so far has seen some glorius weather so far but, whilst some may bask in the fact that we’d normally have to pay to go on holiday to get this heat, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity. Here are some tips to help you in the hot weather.
1 ) Think about your clothing
Whilst wearing shorts or loose clothing are obvious ways of keeping cool, changing your choice of footwear ican make a big difference, too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Liberate your feet with appropriate sandals to help them breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being only a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler, or try the freezer for faster results. Although your own body heat will warm up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler. It can make a huge difference, especially if your house faces the sun.
4) Unplug electricals that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time. You can even get versions for dogs!
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
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.
The recent outbreak of the coronavirus COVID-19 has reached the UK and the Government has advised everyone to take precautions to avoid catching and spreading the condition.
What are the symptoms of COVID-19?
The symptoms of infection are having a cough, a high temperature, and shortness of breath which can lead to pneumonia.
Because this is a new strain of virus, experts say there is a lot we still don’t know about how it will affect people with multiple sclerosis (MS). What we do know is that if you use disease-modifying therapies, as many people with MS do, then you have a higher risk of complications from viral infections, as some DMTs change your immune system.
If you are worried, please talk to your health care practitioner who will be able to advice you on the best course of action.
Protecting against coronavirus
The World Health Organisation has provided the following advice for people to protect against COVID-19.
You should also avoid contact with anyone who has travelled recently to an area where the coronavirus has broken out. The World Health Organisation provides regular updates on cases around the world here https://www.who.int/emergencies/diseases/novel-coronavirus-2019/situation-reports/
In the UK, the medical advice is that if you have recently travelled from areas affected by coronavirus, or been in contact with someone who has, and developed flu like symptoms you should…
We catch up with former Gogglebox star Scott McCormick after he underwent HSCT treatment
On my second day in Hammersmith Hospital, my treatment began.
I had 1.5 litres of chemo drugs, followed by the 1.5 litre anti-thymocyte globulin (ATG) chaser. The ATG was far harder than the chemo – that much I will say. I had a lot of water retention that concerned the doctors. I was carrying 5kg more than usual, which meant I was holding five litres of excess fluid from the chemo and ATG infusions over the previous four days.
Immune system destroyed
At this point, my bloods were frequently checked. I was neutropenic [having a very low level of neutrophils, which are white blood cells that fight infection], with absolutely no immune system what so ever. This meant any everyday bug or virus now had the potential to really go to town on me.
This was not helped by the chemo and ATG making all the thin membranes in my body – from my gums to my rear exit – very thin, sore and swollen.
Preparing for HSCT
Here are some things I’d like to pass on to anyone due to undergo HSCT:
I was so glad that chemo smell only lasted for a week or so. The memory of it will be with me for a long time, I think. It even put me off the deodorant I was using, as I was associating it with the smells. It was a cheap one I will never use again, as I had given this some thought before I went in for the HSCT. Everything was cheap and disposable, so I could bin it after I left hospital.
At the point where I was neutropenic, I had been told by Nader, one of the brilliant nurses looking after me, that if I ever started to feel warm, I should tell someone immediately. Everyone gets a nasty infection at this stage.
So, as predicted, a couple of days after having no immunity at all, I sure enough felt warm, so I informed Nader who promptly checked my temperature and confirmed what was suspected.
He disappeared for a couple of minutes after telling me to go back to my bed. He came back with another two nurses and a tray full of strong intravenous antibiotics, and plugged them into me, with a bag being pumped into each arm simultaneously.
As this came to an end, I was asked to move off the bed, as things can become a bit soft in the bowels. As I stood, I can only describe what happened as a tap being turned on from the back end. I had no control what so ever and made a right mess.
I was told that this will happen to every person at this stage with the strong antibiotics. This made me feel a bit better, but it was so weird not having any control. I still had, before the antibiotics, some level of control of my bowels, even though my multiple sclerosis (MS) had been slowly eroding my sense of feeling and control of all things down there for some time.
So, be aware, this will be something all HSCT recipients will go through.
The treatment actually wasn't anywhere near as bad as I thought it was it going to be. Bearing in mind that the first day at Hammersmith hospital I was told to expect the worst I could imagine, and then some. I guess I can imagine some pretty dire situations, because neither the chemo nor the ATG took me there, although the ATG felt far worse than the chemo drugs.
I was told by a friend’s wife, who knows how to put things into context for a squaddie, that chemo is like Domestos bleach to the body. That’s why they put in a peripherally inserted central catheter (PICC) line to the heart. The heavy thick artery walls are robust enough to take the chemo.
The chemo would take two to three hours to administer. The ATG took between 12 hours to 16 hours to administer the same volume of fluid. This does suggest the ATG is so very powerful, and the body can only take it slowly without it harming the individual.
If you are going to have HSCT treatment, a positive mental attitude will see you through it. You must remember you are in a country of 61 million people, and you are in one of the finest hospitals on the planet, with some of the best people, undergoing a well-rehearsed procedure. You will have passed through the strict entrance requirements to even be there in the first place. You are within reaching distance of a place where MS can no longer hurt you.
Fast forward six months, and I’ve had tests which have confirmed my HSCT treatment worked. I’ll try and explain this with the following analogy. I am a car, and MS is a thug that has smashed me up a bit. The thug has been taken away by the HSCT, but the car remains damaged. This is the simplest way I can explain it. The only downside is that the car might not fully repair itself, if at all. I have my fingers crossed, though. A positive mental attitude should keep me going, and I will have another MRI next October to check my MS has not returned.
For me in the short term, I will chip away to try to get strength back. I used to be a hands-on aircraft engineer, and there was nothing I couldn't do. I want it all back, and I want it yesterday.
Visit www.youtube.com/channel/UCMK3P_VOUfDtKU-JWkoeArg to follow Scott’s HSCT journey.