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.
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.
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.
by Martin Baum
Recently, I was invited to be a contributor for a Q&A article about staying active with MS. Although I have blogged extensively about living life not MS – an issue which connects positively with the many MSers who follow me - this was the first time I had specifically been asked my thoughts about exercise and exercising.
In so far as it goes for one man and his stick, my idea of a physical workout is being taken to the local park by my wife/carer as regularly as my health and the weather dictates. What else was there for me to contribute? Well, as it turned out, quite a lot more than I had initially given myself credit for and this is how.
Aside from my limited bodily activity, I try to do the best I can. It is all about keeping to a regular routine, pretty much the same as for anyone else going to a gym. As any MSer can attest, with something as demotivating as this energy-sapping, soul-destroying illness, it is just so easy not to bother. Some say 'What is the point? I cannot do it. I will not do it. I have MS!'
However, I can and do because there is a point. It is called structure, setting goals. Mine was taking a daily walk of a modest distance which inadvertently, led to an unexpected change in my diet. It didn’t just happen. It wasn’t MS, it was me. Eating too many of the wrong things was causing me to gain weight, making me breathless sometimes and causing a dip in my energy levels. I knew I had to do something.
I call it the Rocket Science diet or, rather, it isn’t. Whilst I wasn’t a great consumer of 'treats' per se, such as bread, biscuits, crisps, chocolate or alcohol for example, I decided to eliminate everything except fish, meat, fruit, vegetables and water from my diet on an ongoing trial basis. Has it been easy? Well, yes, given that this was something I felt was necessary in my limited capacity for taking responsibility for my health and welfare. It’s also given yet more structure to my life. More goals to achieve.
However, there was something else which I unintentionally neglected to include in the article - meditation, which was something I had already been doing for some time and was inextricably a major part of my daily structure.
MS is a sponge which just keeps absorbing and can leave MSers vulnerable, both physically and emotionally. I am no exception. Meditation, though, helps me achieve mental clarity, focus and, to quote Pink Floyd, “comfortably numb”. Since I have begun practising meditation, I believe I can stay one step ahead of MS or, at the very least, keep abreast of it.
Whilst I accept the combined holy trinity of diet, exercise and meditation is not for everyone, I passionately believe that doing something is better than nothing be it diet, exercise, or meditation. Take your pick. Think of it as living life on your terms instead of being at the behest of the life limiting conditions set down by MS.
Failure is Not an Option is a phrase associated with the Apollo 13 Moon landing mission and it should be something for all MSers to aspire to. By doing something is one less thing for a carer, physio, therapist, or neurologist to take responsibility for. To put it more succinctly, if an MSer cannot at least try to do the best they can for themselves, then why should anyone else?
It’s your MS, own it.
Have you thought about joining one of MS-UK's Peer Pods? Here, Peer Support Co-ordinator Vicky shares updates on this growing service for the multiple sclerosis (MS) community.
By now, I am hoping that you have all heard about our new service and the themed Peer Pods that we have been running since March. You may even already have attended one or more of our sessions and enjoyed meeting others online. At MS-UK, we are dedicated to letting the voices of the MS community inform the work we do – so I am pleased to announce that we will be launching three new Peer Pods, based on what our Virtual Insights Panel or VIP (made up of people living with MS) told us they would like to see.
We understand that there are some symptoms and issues that can be difficult to talk about, particularly when they are around sensitive subjects, so we hope that by having these specific groups, people will feel more comfortable discussing the topics that really matter to them.
We also know that 'newly diagnosed' is not necessarily just those that have been diagnosed in the last month or year, or even the last five years. We understand that many people when first diagnosed can spend several years not engaging with health services or the 'MS community' and so this pod is for all those that may only now, for whatever reason, be finally feeling ready to talk.
Unlike our current pods, these sessions will have no particular theme, which means that anything can be a topic of conversation and a chance to share stories and learn from each other.
We know from experience what great benefits there are to be gained from speaking with others that are living with similar challenges, and how this can help people to feel less isolated and alone – regardless of whether you have a good support network of family and friends.
But don’t just take my word for it! Here is what some of the attendees of our pods have said so far:
'Thank you so much for your support. I really enjoyed the zoom get together yesterday, what a fantastic group of people! It was very interesting hearing everyone’s story and I’d really like to join you again in a couple of weeks.'
'I am so happy that I’ve met you, your positivity is infectious, thank you so much!'
'Thanks so much Vicky, I will pop in again next week. I really benefitted from the laughs & sharing experiences.'
'That was lovely! I nearly didn’t join as I was having a bad day, but so glad I did! Thank you so much for setting up the Peer Pods Vicky, it’s like a massive breath of fresh air seeing you all and chatting so freely!'
'So good to chat, ladies. It felt totally ok being able to share with each other in such a brilliant safe space'
'You have all helped me when I was at my lowest and loneliest.'
It needn’t stop there either! We are always happy to hear from you, so if you have any suggestions for a Peer Pod that you would like to see in the future – or if you like the idea of volunteering with us and facilitating a pod yourself – then please do get in touch!
Fancy joining one of our current or future Peer Pods? Simply contact us by emailing email@example.com
I look forward to ‘seeing’ you soon!
Jon Dean has always been a fan of exercise and sport. When he recieved his multiple sclerosis (MS) diagnosis, he thought he could no longer do the things he loved. Here's his story...
Exercise, they say it’s good for you. Throw MS into the mix and it can feel like an impossible task at times. I was always a keen footballer in my teens, I wasn’t particularly good but I loved to play and worked hard to get better. As a goalkeeper, I loved making saves. MS has made my hands constantly numb and one of the worse things for a goalkeeper is to lose their grip. So despite a few attempts to play since I was diagnosed 11 years ago, the gloves and boots will have to remain hung up.
My other fitness passions were going to the gym and running. I had to give up my gym membership 11 years ago as we needed the money due to moving home and our first child was on the way. After years of going to the gym six to seven times a week, I was no longer exercising and my neurologist believes that, and the stress of moving triggered my MS diagnosis. I don’t regret that decision as it could’ve happened regardless and being a parent is the greatest accomplishment in my life.
But 'use it or lose it' has often resonated with me so when things improved financially, I returned to the gym. It was tough. Over a year off, I’d lost so much strength and the added symptom of fatigue made even a 30 minute workout near impossible.
I persisted. I’m glad I did as I’m a fan of playing the long game, my patience is pretty good and eventually I started to feel fitter. Fitness improving with exercise is obvious I know but MS fatigue is something worse than just feeling out of shape so when I started to notice my fatigue had lessened, my morale was in a really good place.
Fast forward to 2016 and whilst I was watching the London Marathon like I do every year, I had always dreamt of taking part but wrote off my chances due to my MS. The commentator then said “if you’re ever sitting there watching and thinking you want to take part but can’t, just apply and see what happens” so that’s what did. One year later I fulfilled a lifelong dream and thankfully the cameras didn’t catch my ugly crying face when I crossed the finish line! I’m so glad I pushed myself.
Four years later I’m still running two to three times a week and still going to the gym five to six times a week. I’ve got RRMS and I feel lucky that I can still do most of the things I did before my diagnosis as one day, things might worsen and I have to look for a different form of exercise. I truly believe finding an exercise that you enjoy can help you mentally as well as physically and my MS is in a good place as a result of that.
I’ll keep going, keep on running and keep making sure I exercise.
Meet Sadie. At only five years old, she's accomplished an amazing fundraising activity to support MS-UK! Here's her story...
My sister, Amber age six, climbed Snowdon last year for MS-UK and I said to my Dad I think its my turn to climb a mountain this year, but I am only five. We decided to try a different mountain, so we chose Scafell Pike which is not as tall, but it is steeper. I set up my donation page, bought some new walking boots and got training. As the weekend approached, we noticed the weather looked very bad so I suggested we go a day earlier and climb on the Friday.
We drove late Thursday and arrived at our hotel after 10pm. On the morning, the weather was lovely and we set off climbing at 10am. Before we started, my Dad stood in a big cowpat which made me laugh and him stink a bit! The climb was very steep, I had to use my hands a lot. The best part was where we had to climb across a stream and we didn’t even get a little bit wet. I had fruit pastelles to get me to the top or as I called them ‘Super boosting sweets’. It took 2.15 hours to get to the top. We turned straight round and came all the way down. In total it took 4.08 hours. The climb was very very tough and I got some bad blisters but I knew we had to finish. My dad told me how proud so many people were of my achievement (he said he wasn’t crying but his eyes had lots of water coming out of them) and I was allowed to have dessert before my dinner that evening.
My grandad had multiple sclerosis (MS) for 22 years and had such courage. Unfortunately, he passed away in 2019 and I miss him a lot. I wanted to do something to make him proud and carry on his memory. I did it for MS-UK as they supported him and my family. They do wonderful things for people with MS. We raised over £2,000 and have made a memory for life.
Helpline and Information Supervisor, Laura is taking on a swimming challenge in memory of her dad. Here's her story...
Well, here we go again!
I first started my swimming challenge in October 2019. I had set myself the challenge of swimming 80kms over the course of a year to mark what would have been my Dad’s 80th birthday. He lived with MS for more years than without. I also work on the MS-UK Helpline, so not only have I seen and felt the impact of MS personally, but I also hear other people’s stories each week.
My challenge came to a grinding halt in March 2020 due to Covid. I had managed to cover 60 lengths every week for 20 weeks, I was well into the swing of things and really enjoying my time in the water. I was feeling fit, and each week was becoming easier. I felt really on track to achieve the distance.
The pools closed and I could not do anything about it. The months went by and in July 2020, we marked ten years of Dad’s passing. I felt disappointed that I could not continue my swim in his memory. Being in and out of lockdown, combined with restricted pool hours, meant my challenge was temporarily on hold.
Fast forward to this year when lockdown was once again lifted, the pool reopened with more flexible opening times. I had lost my swimming mojo though and kept making excuses that life was once again too busy, or I could not log into the new online booking system!
Then something clicked and I pulled my finger out! Last week saw me enter the water for the first time in 15months. I was quite nervous, I thought there is no way I will be able to cover the distance having not swum for so long. Being back in the water was so nice and although it took me several lengths to get my mind focussed, once I got going before I knew it, I had swum 60 lengths. It felt so good!
I have booked to go tonight, and I have made a promise to myself to do my best to go every week until I have reached the final distance of 80km. So far, I have covered 31.5km of my target. That means if I swim 60 lengths each week, I have another 32 weeks to go! I would love to complete it by the end of the year if I can. I will need to go more than once a week, but I am determined to finish what I started. Dad was the most determined person I have ever known, he is always my inspiration.
To donate to my Justgiving page, please visit the page here.
My name is Katherine and I am delighted to be given the chance to run the Virgin Money London Marathon this October for MS-UK!
I started running in my final year of university, after (drunkenly) signing up for my first half marathon. After training hard and crossing the finish line, I was adamant I would never be doing that again. Little did I know, I had caught the running bug and would go on to run a further four half marathons. Running has become my way to keep fit and healthy both physically and mentally, giving me a sense of achievement and confidence unlike anything else. With everything 2020 threw at us all, running became more important for me than ever, and the time seemed right to take on the Virgin Money London Marathon for a cause close to my heart.
I am fundraising for MS-UK as my mum lives with multiple sclerosis (MS) and it means a lot to me to be able to help support others and their families who are affected. MS by its nature is unpredictable, and as a family, we have found ways to adapt and keep smiling, and the way my mum approaches each day is an inspiration to me.
Fundraising so far has been great, putting my cause out there has kicked things off well, using my Instagram and Facebook pages to reach friends and family. Strava has been a great way to share my running progress and inspire donations, and I will continue to share my training as distances increase. Linking Strava to my JustGiving page means anyone can see the miles clocking up.
The big sporting events of this summer, the Euros and the Olympics, are great fundraising opportunities. I am currently running a sweepstake for the Euros which is great fun and a boost to my fundraising total. Hopefully, an in-person event over the summer will also be possible.
I am incredibly inspired by any runners who also live with MS, when my body protests at another training run, I remember all the people in #TeamPurple training too, and everyone my fundraising can help. I can’t wait to run alongside everyone in London and share the achievement at the finish line!