The heat is on for new cooling drug, says Feature Writer and MSer Ian Cook. 
If you suffer from heat sensitivity you will know it can be a big summer holiday spoiler and although other multiple sclerosis (MS) symptoms often get talked about, heat sensitivity doesn’t get the coverage it deserves. As a sufferer I find this fact surprising because the link between heat and MS has been known about for 130 years. Back in 1890 Wilhelm Uhthoff, a German neuro-ophthalmologist, noticed that some of his MS patients’ visual problems got worse after exercising and getting hot. This later became known as Uhthoff’s phenomenon.
Then, in the 20th century the diagnosis of MS involved something called the ‘hot bath test’ where patients were lowered into a bath of hot water to see if their condition worsened when they got hot. If it did they would be diagnosed with MS.
Sweat connection
More recently, in the early years of the 21st century, researchers tried to identify the exact mechanism through which heat sensitivity has an effect in MS. The first thing looked at was the fact that MSers overheat because we lose our ability to sweat as MS progresses. Normally adults can sweat between two and four litres per hour or 10–14 litres per day and sweat cools the skin as it vaporises in a process known as ‘evaporative cooling’. But in MS things don’t work so well. Research carried out in 2009 at Oulu University Hospital in Finland looked at sweating in 29 MS patients and compared these patients to 15 people unaffected by MS. The research found that MS patients sweated markedly less than people without the condition. After just 10 minutes of heating, sweating was significantly lower in the forehead, feet and legs of MS patients than in those of those who didn’t have MS, meaning MSers were overheating as they were unable to benefit from evaporative cooling.
Sweating in simple terms is a two-way process. Temperature receptors in the skin send messages through the nervous system to a part of the brain known as the hypothalamus where heat-sensitive nerve cells are located. These cells in return send messages to millions of sweat glands in the skin to
release sweat causing evaporative cooling. For a message to travel between the hypothalamus and the sweat glands the nervous system must carry these messages efficiently.
One of the key chemical elements involved in this process of efficient communication is sodium. As axons in the central nervous system heat up, the amount of sodium moving into the nerve increases in a process known as sodium loading. However in MS this process goes into overdrive and excessive
sodium makes it harder for messages to be sent efficiently up and down nerves to and from the sweat glands. This results in less sweating and overheating.
Dr Mark Baker of Queen Mary, University of London is currently researching ‘sodium loading’ in axons. Dr Baker is looking for a drug or drugs that could target MS heat sensitivity by reducing the amount of sodium travelling into nerve cells when the temperature increases, allowing messages to muscles to be sent more securely and therefore better communication with the sweat glands and more sweating. 
Drug hope
One drug that is believed could have this effect is bumetanide. This drug is already used to reduce extra fluid in the body (oedema) caused by conditions such as heart failure, liver disease, and kidney disease so we know it’s safe to use. It is thought bumetanide might be effective in tackling heat
sensitivity because it reduces the amount of sodium entering cells. Dr Baker has been leading research into this area but says that bumetanide comes with major problems. It is poor at getting into the brain and nervous system and thus poor for accessing damaged axons. A side effect of bumetanide is
increased urination – something that would be unwelcome by many of us MSers who suffer urinary problems. Dr Baker says these facts are leading him to look for other drugs.
“We need to investigate other compounds that have much better brain penetration and we have plans to do this. We also think there may be another molecular mechanism causing sodium loading that is not affected by bumetanide and this is one of the things we are working on.
“Exploring this avenue may allow better pharmacological control of temperature-dependent symptoms, and in the longer term could provide a route to neuroprotection. So right far down the line neuroprotection is a massively exciting idea that means we may be able to protect axons and neurons from the worst effects of neuro-inflammatory disease and slow progression by reducing the energy expenditure in axons as well.”
Although it is early days in Dr Baker’s research, it is hoped that continuing work on heat sensitivity could lead to other drugs which would not have the side effects of bumetanide and may even have a neuroprotective role too. Until that day happens, MSers will remain reliant on the tried and trusted techniques for keeping cool such as fans, jackets or sprays. I, for one, will be hoping that it’s not too hot this summer, and I will of course also be using a fan, a spray and possibly other cooling aids in case, like last year, we have another long hot summer/ Meanwhile, the heat is on in the search for a new cooling drug.
This article originally featured in issue 122 of New Pathways magazine. For the latest treatment, symptom information and real-life stories, subscribe to New Pathways by clicking here.
Olfactory hallucination are nothing to be sniffed at
Have you ever found yourself commenting on the sudden smell of burnt toast, much to the bewilderment of your family? Or were sure you could smell something foul, yet others around you were baffled and unable to detect anything? Well, you may well have been experiencing phantosmia.
Phantosmia is the name for olfactory hallucination – in other words, when you detect smells that aren’t actually there. And it is a symptom sometimes reported by people with multiple sclerosis (MS).
The smells detected can vary hugely from person to person, and they can be extremely pleasant, or completely foul. The odours can come and go, or someone may be able to smell them all of the time.
So far, science knows that phantosmia can be caused by a number of things. These include inflamed sinuses, brain tumours, temporal lobe seizures, head injury, upper respiratory infections and Parkinson’s disease.
Smell and MS
The sense of smell has long been used in sensory evoked potential testing to monitor the progression of MS, even though some doctors feel this option is not as reliable as visual evoked potential testing.
Smell is regulated by a network that includes the olfactory nerve and other areas of the brain. The nerve doesn’t have much myelin, and scientists previously thought the sense of smell was relatively untouched by MS. But research has since shown that olfaction is often damaged in the early stages of neurodegenerative disease, such as Alzheimer’s and Parkinson’s.
One three-year study, which looked at 20 people with MS, found that around half of people with the condition have a reduced sense of smell, and that olfactory impairment may be a marker for disease progression.
Consult your doctor if you are experiencing phantosmia, so that other conditions can be ruled out.
It’s that time of year again, the sun is out, the mercury is gradually rising and it’s time to welcome in the unpredictable British summer for the next few months. For some people affected by MS, summer can also be a time of concern as the increase in temperature and humidity can cause a temporary worsening of symptoms, so it is important to keep as cool as possible. Allow us to assist you in cooling down with these six tips which you can take advantage of with minimal fuss. Helpline Officer, Shaun shares five handy pearls of wisdom to beat the heat. 
Your body contains pulse points that assist in your body’s heat regulation function, situated in areas such as your wrists, ankles, the rear of your knees and your elbow crooks. These are sensitive points of your body where the veins are closest to your skin’s surface, allowing you to access your blood and circulatory system more directly than in other areas of your body. By applying something cool to these areas for 20 minutes or so at a time, such as an ice pack covered with a towel, a cool wet towel or simply a bag of something frozen from your freezer, your body will benefit from a rapid cooling sensation.
Your feet are home to thousands of nerve endings and play an integral part in helping you to control your body’s temperature. Keeping your feet cool can be a quick and easy way to prevent overheating. For example, fill a bowl or bucket with cold water and dip your feet into it, place a damp towel over your feet, spray your feet with cool water or a specialist cooling foot spray, such as ones infused with Peppermint that help to promote that cooling sensation.
Cooling scarves are simply something you tie around your neck with the impact being a full-body cooling sensation. These simple yet effective ties and scarves are relatively cheap and accessible. Some come with replaceable cooling inserts that need to be frozen and others contain polymer crystals that when soaked in water cools the body through evaporation. There are some scarves, shawls and ties that you can buy direct from the suppliers and there are also other options available on the internet. Try Soo Cool, MediChill, or TieChilly, with other providers also being available.
Cool clothing
Wearing suitable clothing made of breathable materials is a must in the quest to stay cool. Cotton, linen and rayon are all materials that are breathable and can help your body’s temperature regulation process. Go for lightweight, loose clothing and if you are venturing outdoors also consider the colours you wear. Remember, dark colours absorb more heat than lighter coloured ones, with the science behind this being that the closer to black, or darker, a colour is the more light energy it absorbs. The lighter the colour the more light energy is reflected with the result being that your body stays cooler.
Keeping your home cool is an effective and easy way to help prevent your body from overheating. Some quick ways of doing this include closing the curtains or blinds of windows that are facing the sun, positioning an ice pack or bowl/drinks bottle containing ice in front of a fan to create an air conditioning effect and closing the doors to a room you wish to keep cool to help prevent warm air from entering. Also consider letting the cooler night air into your home by opening your windows once the sun has set, so long as you feel comfortable in doing so.. 
Staying hydrated is a vital part of helping your body to stay cool, with the Public Health England’s Eatwell Guide suggesting we each consume between six to eight glasses of fluids per day, this includes water, squash, tea and coffee. It is not just about drinking water regularly, when you sweat to keep cool your body loses electrolytes such as sodium which our bodies use to help maintain fluid balance and blood pressure. The good news is that there are easily accessible, healthy drinks that provide a good source of electrolytes, such as Coconut Water and Milk. Foods such as Yoghurt, Bananas, Watermelon, Avocado, Chicken and Kale are amongst a whole host of foods that provide a natural source of electrolytes. Why not try a cold salad on days where you feel particularly affected by the heat, washed down with a cold glass of water or sugar-free squash?
If you have any questions about multiple sclerosis, call our helpline free on 0800 783 0518 and speak to one of our helpline information officers. The MS-UK Helpline is open Monday-Friday, 10am-4pm.
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.
It is a pleasure to be able to put together a series of masterclasses around exercise and education in MS. I spend a lot of time working and educating people around their symptoms and seeing the effects that MS has on their bodies, whether walking, sitting or tasks of daily living. By helping people have better knowledge and understanding about their MS symptoms, it allows people to have more independence and improve their quality of life. 
As a Level 4 Exercise Coach for Long term Neurological Conditions, I have been working with people with MS and other neurological conditions for the past nine years and if you have been following our online classes or joined in one of the many information sessions from our fellow professionals, you will be building a wealth of understanding that will help you on a day to day level, reduce symptoms and help maintain a more stable condition.
People with MS experience different symptoms with their condition from muscle weakness, fatigue, spasms, numbness/ tingling, difficulty walking, coordination, balance issues, are just a few symptoms associated with MS. One of the many symptoms I am asked about is foot drop, the inability to lift the toes and flex the foot at the ankle. Many of you may have found yourself walking normally and then after some time your foot starting to drag or catch on the floor, maybe having more trips and falls, a high stepping gait or throwing the leg out to the side when trying to walk.
During the next masterclass, I will address some of these areas and demonstrate some exercises that can be beneficial for foot drop. I will talk about types of equipment that can be used like foot drop stimulators and foot orthosis that assist for the foot drop condition.
The exercises will help to support a better functional capacity and help maintain a more neutral foot position. We will also look at the global effects that it has on the rest of the body when sitting, standing and walking itself.
If you like the sound of this masterclass, please come and join us! To register for the session, please click here. There is a suggested donation of £5, but you can donate any amount from £1 to attend.
Every month, our online masterclasses offer insight to different topics and special areas of interest that have been suggested by participants who attend our exercise classes. The masterclasses complement our weekly online exercise classes which take place every Tuesday and Thursday from 11am. The aim of each masterclass is to focus on a chosen topic area that people have identified as needing to know more about.
The masterclasses are led by Alan Pearson, our level four exercise specialist who has nearly a decade of experience providing exercise prescription as a means of managing the symptoms of multiple sclerosis (MS). Alan structures each masterclasses to first provide the understanding behind the theory of a problem such as foot drop and then demonstrates techniques to help manage the issues experienced through the use of exercise. 
Our next masterclass is on Friday 16 April at 11am, which is second in the series of our online masterclasses where we will be focusing on corrective stretching. If you would like to know more about the session or how to register, click here.
See below some of the feedback we have received from our masterclasses that have taken place so far
“I thought the session was nothing less than brilliant. So practical, so reassuring, and so understanding. Alan is amazing.” – Jackie
“Alan's balance masterclass was excellent. I can't tell you how very helpful it is to get these insights into how our brains and bodies work together and the effects that damage can have and how we can work to maintain and improve those links. They are really motivational too.” - Sarah
“It’s so helpful to learn about what’s going on in the brain and body and to understand more about the links between them. It’s obvious that Alan knows his stuff.” - Lisa
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. 
Click here to find out the benefits of each diet
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.
Read more about diet and supplements
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.
#livelifenotms
#msshine