What is Multiple Sclerosis?


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25 April 2022

MS is a condition affecting the central nervous system (the brain and spinal cord). It's estimated that over 150,000 people in the UK have MS.

In this podcast we chat to two guests about MS. Simon, from our MS Trust information team, who answers questions from people affected by MS on a daily basis, via email and our MS helpline. He gives us an MS 101 lesson, covering topics such as how MS is diagnosed, who gets MS, what treatments are there for MS and much more.

We will also chat to Hugh Nibloe who is a Wheelchair Curling World Championships silver medal winner and Wheelchair Curling Paralympian for Team GB who lives with MS.

Episode notes

Our MS Trust helpline is available from Monday to Friday (except UK bank holidays) from 9am to 5pm. Outside these hours you can leave us a message and we'll get back to you as soon as we can. Call our 0800 032 38 39 or email ask@mstrust.org.uk. It's available to anyone who wants to know more about MS, not just those currently living with the condition.

Read the transcript

Hi, I'm Emma, and I'm Helena. And we both work at the MS trust. Just a little disclaimer, we're recording this over Zoom, so apologies if the sounds at any stage, please do be bear with us.
We'd like to welcome you to our podcast, Multiple Sclerosis - Breaking It Down and this episode, which we've called, “What is MS?” Now we realise that a lot of our listeners might already know the answer to that question. But as this episode is coming out during MS Awareness Week, we thought it'd be good to go back to basics and explain exactly what MS is for those who don't already know maybe you've got some strange symptoms that you can't explain, and you think you might have MS or a family member or loved one has just been diagnosed. Perhaps you're wanting to learn about it for a school project. Or maybe you've been living with MS for a little while and still want to learn more. Well, this podcast is just right for you.
Myself and Emma, we work for the MS Trust, which is a UK charity for people affected by multiple sclerosis. The MS trust is here for everyone affected by MS from the moment of diagnosis and throughout your journey. We're here for you today, tomorrow, and every day after, making sure that life with MS isn't the life that's defined by MS. We provide trusted information to help people with MS live the best life possible. We train and educate MS health professional to offer the best care and we fund MS nurses in areas of greatest need. In the UK, there are over 130,000* people living with MS and there are over 100 people getting diagnosed every week.


So, in this podcast will be chatting to two guests about MS. One of those is Simon, from our very own information team who answers questions on a daily basis from people affected by MS who call or email our MS helpline. He is going to be giving us a bit of an MS 101 lesson.

We're also going to be chatting to Hugh Nibloe, who is a Wheelchair Curling World Championships silver medal winner and Wheelchair Curling Paralympian for Team GB who lives with MS.


But let's first start with Simon and what is MS.

Helena
When I, that's Helena, was first diagnosed with MS in 2007, I almost immediately went online to look up information. And there was a lot of weird scary things. So, I realised quickly that it was important to get the right information, really properly fact checked information. And I came across the MS Trust website early on, and I really liked their tone and voice. And that they had the reputation of making sure that all the information they provided was reliable. I mean, I liked it so much, I actually got myself a job here! But that's a different story. A lot of people who want to learn more about MS call our inquiry lines, so we thought who’d better to talk to us through the ins and outs of MS than Simon, who is in charge of the MS Trust helpline. And he's also written several publications on the topic. Welcome to the podcast, Simon.

Simon
Hello.

Helena
Right. So, should we start with an easy question… should we start with, what is MS?

Simon
Right. MS is a condition in which the immune system attacks the substance that covers the nerves in the brain and the spinal substance called myelin. Myelin works by insulating the nerves and helping the messages that go along the nerves to travel more quickly, and also protects the nerves. And so, when there's a patch of inflammation, where there's a patch of damage, the nerve messages through that area gets slowed down. And depending on where those messages are going, that can create the symptoms of MS all over the body, I mean, the brain and the spine drive everything in the body. And these areas of damage, stop the messages getting through so quickly. Over time, if the nerve fibres themselves are left exposed, they can be broken, and I'd lost entirely and then that particular nerve pathway is lost. And that can create the more permanent and more progressive symptoms.

Helena
I've seen this sort of likeness a few times where people use like an electrical cord, and they'd sort of gets the wear and tear on the actual code that it will still start kind of functioning, sending the messages might be a bit slow, and then the more damage it gets, then maybe the whole cord is broken and then the computer starts being faulty. Is that sort of accurate?

Simon
Yeah, yeah. And also, the brain is quite clever in sort of trying to cope with this. And if a particular pathway is blocked by sort of some damage, the brain can redirect messages around the blockage. But you know, that's like if somebody's digging up the high street, you can still get there by going down the back streets, but it'll take you longer. And eventually, there might be roadworks in the back streets as well and it's just impossible to get through. So, the damage doesn't necessarily stopped things happening, but it can make them harder for the for the body to get the messages backwards and forwards and can jumble the signals that the brain is receiving as well.

Helena
And I suppose some of these jumbled signals can cause MS symptoms. So, we talk a lot about them as symptoms. What are the most common MS symptoms?

Simon
Well, there is a huge variety of symptoms, and it does depend where in the brain and the spine, those patches of damage occur. And what happens is, it's almost like a game of battleships. If you're in a particular place, you might have problems with mobility, or you might have problems with sensations in a limb. If the patch is only a slightly bit, slight distance, one side or the other, it might be an area which is less associated with function. And on the scanning, the lesion that you see on an MRI scan might look similar in both instances, but in one instance, somebody is unable to walk, and in the other, they might not have any visible symptoms at all.

Helena
When you look at the scan, you can see we're saying sometimes, you can sort of tell what's wrong. I know that I've had neurologists look at my scan and sort of say, “Oh, the one that you have on your spine that's causing this specific symptom”. But most of the time, if you get presented with a scan, you wouldn't necessarily know what could go wrong in the future, would you?

Simon
Yes, the brain is so complicated, there's certain areas of the brain which are associated with some symptoms, but it's hard to; it's not a sort of direct plugboard, that if something goes wrong here, then that symptom will occur. I mean, sometimes symptoms are happening in the spine, they affect the wiring below that. So, you might sort of get problems with mobility or bladder or bowel issues, things that are below the point where that damage happens. But equally, Planet symptoms can be caused, for instance, by various centres in different parts of the brain, all of which have a role in the normal functioning of the body. And then, wherever the spanner goes into the works, that can cause difficulties.

Helena
I guess the brain controls absolutely everything. So, that's why we get some very many varied symptoms of MS. When we spoke a bit about the scans and such, how do they actually diagnose MS, because it's not the most straightforward procedure, is it?

Simon
It's not. Ultimately, it's down to the clinical judgement of a neurologist. There's not a single smoking gun, that if you have this particular thing, that means you have MS and if you don't have it, you don't have MS. It’s ultimately down to the judgement of the neurologist, based on their observations and then also supporting evidence from various tests. Those tests, the neurologist is likely to talk about your medical history and talk about previous instances of symptoms that may go back a number of years and at the time; either came and went without seeking help from a doctor, or seeking any medical help, or were put down to something else and were not considered to be MS at the time.
But then when you sort of look back from a point where you think, “Is this MS?”, these sort of little islands of instances of symptoms can sort of be dots that can be joined together that can make MS seem a more possible explanation of the symptoms. There are tests that are used to support the diagnosis of MS. That MRI that we've talked about is probably the one which is most commonly used, which allows them to see a slice through the brain and the spine and pick out areas of inflammation and damage that have happened. Lumbar puncture is also used in some instances as well, which extracts a sample of the fluid that surrounds the brain and the spine, and they can analyse that; essentially, they're analysing it for debris that is floating around it, resulting from the damage that has happened to the central nervous system, then the brain and the spine.

Helena
With the lumbar puncture and the MRI, we do have lots of videos on YouTube, explaining some more of these, which we’ll pop in the show notes, but we do get questions sometimes if it’s horrible to have these tests. Is there anything people can prepare to have them?

Simon
Yeah, MRI well, essentially, you're put into a tube which is quite noisy. Well, whilst the scan is happening and you've got to lie there very still whilst it's happening, it's not intrusive, in the sense that nothing's going into your bodies. It's just you're setting a very powerful magnetic field, it can feel very claustrophobic, and the noise can be scary, I suppose.

Helena
I was going to say, like a bad technical concept, but scary will do.

Simon
If you are claustrophobic, it can be an issue. But, the radiographers and the MRI team will have experience of people who've had those situations and will do their best to put you at ease. The lumbar puncture is invasive, in they have to put a needle into your spine to draw the fluid out. There are potential drawbacks if it's not done well, because by decreasing the pressure of the fluid that's around the brain and the spine, that can lead to headaches. If you're up and around too quickly, or you're not taking on enough fluid to counteract what's happened during the lumbar puncture. And the actual process, if done badly can be painful, but in experienced hands, is relatively straightforward. I would encourage people to have a look at Professor Cole's video about that, because he explains it very well.

Helena
Yeah. And I think there's definitely some ideas on preparing and then you saying about drinking afterwards? I think people have recommended a full fat Coke. I don't know if that's if that's true or not, but, yes. So, you know, looking back at things with MS. There's a lot of things that's happened in the last few years in research and things, but how long has MS actually; obviously it's been around we don't know for how long, but how long have we known about MS? When was it first discovered?

Simon
It was first given its name in 1868 by a French neurologist called Jean-Martin Charcot, who gathered together evidence from the research that had been happening and actually put it together as identifying the condition underneath it and gave it a name. He called it la sclérose en plaques, which is still the French name for multiple sclerosis. Though, the earlier work goes back to right of the start of 19th century where with a lot of conditions, people started looking sort of deeper into things and sort of trying to unpick the general ideas of malaise that was out there and identify what was going on. And there were a number of pathological studies of people who died with symptoms where they identified that within the brain tissue and the spine tissue, there were these little hard patches that were unusual and were assumed, they were associated with illness, though, how they fitted together didn't really fall into place until Charcot came along in the middle of the 19th century.

Helena
And how did they use to diagnose it before MRIs and lumbar punctures and all these things?

Simon
It was more haphazard; it was sort of solely down to the neurologists. The example that often comes up, one of the issues for people with MS is an intolerance of heat, particularly an increase in temperature, and that can make their symptoms worse and many people with MS also find hot weather in the summer or any raises in temperature can cause problems. And there was a thing called a hot bath test where effectively somebody was put into a hot bath. And if they struggled to get out of it effectively, how many of their symptoms got worse, that was seen as a potential indicator of MS. It hasn't been used for an awful long time.

Helena
Quite thankful to be honest. It does sound a little bit Monty Python.

Simon
But the effects that we use for that are still very common and we do regularly get questions if it's a hot summer from people who are finding that their MS is worse. I mean some people find the cold affects them as well but certainly changes in temperature is not good for a lot of people with MS.

Helena
No. And it's funny I think after I read about the hot bath test, there's been a few occasions when I've gone in a bath that's been too hot and then struggle getting out because fatigue or tingling has happened. So, I can sort of see that; even if I said it's some Monty Python, I could see where they were coming from, but I'm not sure that it's a very nice process of throwing your patient into the bath.

Simon
Yes, yes. It demonstrated something, it was perhaps not the most dignified way to go through a diagnosis.

Helena
No. So who gets MS?

Simon
Well, that can be anyone really, the typical, as much as anything is typical in MS, the typical person with MS would probably be diagnosed in their 20s, or 30s, is more likely to be female than the male; it's about three to one, women to men who get MS. Though, people are diagnosed younger than that, I think the youngest person diagnosed with MS was possibly under two. And certainly, there's I think it's around 4 or 5% of people who have diagnosed before they're 18, usually after their adolescence, but it's also in in their teens. And equally people can be diagnosed later than that. And I've spoken to people in their 70s and 80s, who have only recently been diagnosed with MS. They may potentially have had symptoms, undiagnosed for some time beforehand, but actually getting to the point of diagnosis can happen at any point in life. Historically, it tended to be associated with white people rather than people from different ethnicities, but there is research going on that sort of indicating that if that was ever the case, that's no longer the case. And the prevalence in different ethnic groups is similar.

Helena
And I guess this coming out during MS Awareness Week, and we're raising awareness of MS. I guess the thing to say is, if you're not white, and you suspect that you have MS and you've been fobbed off, because they say it's a white person's disease, that's certainly not right anymore.

Simon
Yes, that's certainly the case. I mean, there does seem to be a variation in the distribution of MS around the world, the closer you are to the equator, the less common MS seems to be, they’re the sort of theories that that's linked to exposure to sunlight or to vitamin D or other issues. And so, MS is more common in in Europe, North America, Australia. And if somebody travels, after adolescence, they retain the prevalence rate of where they came from. So, if somebody came from the Caribbean or from Asia, as an adult, they would retain the risk of MS that we've seen in in Asia or the Caribbean, which is relatively low. If somebody travels before adolescence or is born in an era of high prevalence, they are more likely to have the prevalence of the of the local area. So, the children of immigrants are more likely to have MS perhaps than the actual immigrant generation itself. And so, non-white populations, the prevalence rate is now considered, you know, there's no sort of particular racial difference in prevalence rates for people who are born in the UK.

Helena
We've sometimes seen some records that people talking about the so called the Viking Jean. What's this about?

Simon
Yes, again, this is based on the idea of where MS is most prevalent, the idea that the areas where MS is most prevalent, it's particularly in the north of Scotland and in Canada, areas which are associated with people of Scandinavian descent. And yeah, that's where the idea of the Viking gene comes from. Whether it's true or not, is hard to say. But it's I think it's possibly historical accident as much as anything.

Helena
Yeah. I mean, being of Scandinavian descent, and a woman who was diagnosed when I was 29, I feel like I'm pretty much a stereotype as you can be when it comes to MS.

Simon
Yeah, I mean, it's certainly true that the higher prevalence rates in the UK, the prevalence in the north of Scotland and particularly in Orkney, is high and it's high in Canada as well. Prevalence in Scandinavia is higher than it is in the Mediterranean.

Helena
How many people in the UK and I guess in the world, approximately have got MS?

Simon
It's strangely imprecise figure, in the UK, there's no register of people who've got MS, there is a thing called the MS register. But that's a self-referral thing that collects information, really useful information about how people live with MS. But there's no register of who's actually got MS in the population. There was some research probably seven or eight years ago, which put looked at medical records, GPs, and other records. And that came up with a figure which has then been revised a few times to take account of new people coming along, new people being diagnosed. And on that basis, that puts the figure at around 130,000* people in the UK. The work that the MS Trust has done recently, mapping services and caseload for MS nurses. And how many people the MS nurses are seeing suggests that that number is a little bit low. And it might be another 10,000 on top of it. But the figure that sort of accepted at the moment is around 130,000* people in the UK. And similarly, across the world, the figures are sort of educated guesses, but is considered to be in the region of about two and a half million, maybe possibly a little bit more than that, no.

Helena
So, it's fair to say that it's a common neurological condition.

Simon
Yes, it's not the most common but a lot of people will be affected by MS. Of course, MS doesn't just affect the person who has it, it affects the families and their friends. So, if you consider the number of people who are actually affected by MS to some degree, including those indirectly, you're looking at way more than 130,000*.

Helena
When you were talking about getting diagnosed and looking at your medical history, well they add in at all, in taking the count, if there is MS in the family?

Simon
That can be something that adds to the evidence that they're gathering together. MS isn't a hereditary condition; it’s not passed directly down through the generations in the way that some other conditions are. Research into the genetic risks of MS, as identified, it's over 200 genes. Now, each of which increase the risk of getting MS by a small amount, none of them would cause MS in its own right. But if somebody has the right number or the wrong number of these genes, then they are susceptible to developing MS. Though, then take some something in the environment, a virus perhaps, or something to do with vitamin D or other lifestyle factors that then trigger the processes that cause MS. So of course, everybody gets their genes mixed from both parents. So, if one parent has MS, their MS genes, you are mixed with the genes that come from the other parents. So, they're not being passed directly through to the child so that that reduces the risks to some degree. So, if you have MS in the family, you have a higher risk of developing MS than the general population, but it's still quite a small risk. I think the figure if you have a parent with MS, the risk is about 2 to 3% that you develop MS. But you know, that's 97 to 98% risk that you won't have it. And most people who are diagnosed with MS don't have a near family member who's got a MS. So, how that works is still to be determined.

Helena
Two questions that I'm guessing we get asked an awful lot would be what causes MS. And is there a cure? Not easy questions to answer. But yeah.

Simon
And the answer to both is that it's not properly known. Associated with MS, there's certainly a genetic element that develops this susceptibility to get MS. And then there is something that triggers the process, but that's what that trigger is not properly understood yet. There's been a lot of work looking at whether it's a virus that might cause it and the current lead suspect perhaps is the thing called the Epstein-Barr Virus or EBV, which is the virus which causes glandular fever. It's a very common virus, the majority of the population, certainly the majority of the adult population will have antibodies to it, will have been exposed to the virus. Even if they've never had glandular fever, in majority of people, the virus will arrive, but their immune systems sort of controlled it and the virus survives in the body. The theory is that for those people with MS, having the virus in their system makes the immune system mistake it for something in myelin and start to attack the myelin around the nerves instead of attacking the virus, leading to the symptoms of MS. But as well as a potential virus, perhaps there are factors that do seem to have a role in the risk of developing MS. People with MS seem to have lower levels of vitamin D. And researchers as identified the people with lower levels of vitamin D seem to have a higher risk of developing the condition. Smoking seems to raise the risk of developing MS. And if you have MS, smoking seems to raise the risk of having a worse course of MS than somebody who doesn't smoke. There's been work looking into BMI, sort of weight, when someone's an adolescent, and people are overweight in that period, seem to have a high risk of subsequently developing MS. So how are these factors all fitting together? It's still ongoing research, but they're all associated with certainly a higher risk of MS. If it's probably you couldn't say that they cause MS. But they, they certainly sort of involved in some way. The Cure side of it? Well, that's, you know, ideally, we find the cure, there's no need for the MS Trust, everybody goes off and lives happily ever after. Sadly, that's not the case, at the moment research is moving forward all the time and finding new and better ways to try and manage it. But to make MS go away, that's much harder. Some of the disease-modifying drug approaches can put MS into, for some people, into remission, or certainly sort of a longer-term remission. But perhaps the holy grail would be something that does that and also repairs the damage that's happened. It probably raises the idea of what is a cure? Does the cure mean, you go back to how you were before MS started? Or does it mean that you get to a state where MS is not getting any worse? And the possibility of stopping MS is seeming much more real with the way that the research is going. The idea of going back to how you were before day one. That's probably a longer-term dream.

Helena
Yeah. But there's definitely a lot of exciting things happening in the world of research.

Simon
Oh, certainly, yes. On both sides of it, drugs that are more effective at slowing the cause of MS and certainly the processes that cause relapses and increasing the interesting research that suggests it's possible to repair myelin and to some degree, sort of patch up the damage that has happened that's at a more experimental stage. But there are indicators that it might be possible and the medication might be able to help that process to happen.

Helena
And there's more information about that on our website as well. We will pop links into the show notes for remyelination and possible cures links and that. You mentioned relapses. We haven't spoken about that. There are a few different types of MS.

Simon
Yes. I mean, typically, again, sort of back to the typical MS. People are diagnosed with what's called relapsing remitting MS. That's probably about 85% of people will be diagnosed with relapsing remitting MS which is characterised by relapses where symptoms come on very suddenly, plateau for a time, and then sort of gradually recover to some degree afterwards. So how many if you're mapping it, it would be like a series of waves. Where you have the relapse, you have the gradual recovery from relapse, then you have a period of remission, where there isn't a relapse, the symptoms may persist in that and you get sort of daily fluctuations perhaps, but you don't get that spike of symptoms, and then another relapse comes along. At some point, after that, the other aspect of MS and the other 15% are diagnosed with what's called Progressive MS. Where, from the start, the fibres are damaged and lost and symptoms will gradually increase over time, in the absence of relapses. And if you sort of drove through that one as a graph, it would be a gradual, steady line that's increasing. If MS is diagnosed as progressive originally, that's called Primary Progressive MS. For a proportion of people diagnosed with relapsing remitting MS, over time, relapses will become less frequent, and MS will become progressive. So, the symptoms will gradually increase in the absence of relapses. And because that follows on from a period of relapsing MS that's called secondary progressive MS.

Helena
When you get diagnosed, will you always be told what kind you have?

Simon
It isn’t necessarily always straightforward, particularly with progressive MS that's harder to identify. If you're having a relapse, that's probably sort of more noticeable because you will have a spike in symptoms, and then there's a period of recovery afterwards. But sort of spotting when MS is become progressive is more of a retrospective diagnosis than then on day one, saying this is how it's going to be. And it's, for most people, it's not a rapid decline in their health, it's more a case of you know, a year later, you think “I'm finding it a bit harder to do what I could do a year before”.

Helena
Can MS be treated?

Simon
Yeah. So, there are sort of different approaches to treating MS for the people with relapsing MS. And also know, some people with progressive MS, though there are drugs that have an effect on the underlying cause of MS. And as a result, called disease modifying drugs, which effectively, what they do is slowing down the disease processes of MS. So, for people with relapsing MS, this will mean that there are fewer relapses, and the build-up of longer-term problems is slowed down. There are now two drugs that have come along; one for secondary progressive, one for primary progressive, that seem to slow down the rate of progression for some people, so that what they're doing is effectively sort of flattening the curve MS has been stretched out longer, and there does seem to be research that suggests that the time to get to different sort of milestones, if you like, in MS, is been lengthened out. And this could very well be due to the medication to the disease modifying drugs. But MS is not all about disease modifying drugs for relapses themselves, that treatment can be treated with steroids which have an effect on damping down the inflammation that's happening in the middle of a relapse. Steroids don't have an effect on the long-term course of MS. But they can get you through relapse a little bit quicker than if you didn't take the steroids, you know, worse off than not taking steroids in the long run. But you might have the relapse for a few weeks longer if you do. And of course, there are treatments for the individual symptoms of MS that come along. And this is sometimes overlooked. But it is very important than, that there's sometimes there's the perception that if you don't, if you're not eligible for a disease modifying drug, then there is nothing for you. But that's not the case. There are things that can be done to help treat and manage individual symptoms, whether and that will depend on the nature of the symptom and the severity of the symptom. And it might include medication, it might include physiotherapy, it might include equipment or orthotics or depending on what it is. So, there are things that can be done. And of course, there are things that people can do for themselves as well. There are lifestyle factors which can put you in a better place to cope with what MS is throwing at you. So, things such as staying as active as circumstances allow, eating healthily, not necessarily following a particular diet. But other than sort of generally healthy diet, trying to avoid stress as much as possible. Not smoking, not drinking to excess. It's the general healthy advice that we all know and tend to try and ignore as much as possible. But the healthier you are in yourself, the better you're able to cope with what MS throws at you. And I wouldn't say that only lifestyle or only medication is a good approach. The best approach is tackling MS on all the different fronts.

Helena
If you think you have MS, what should you do?

Simon
The first step is to talk to your GP. And that MS symptoms are well, there's a lot of them. And a lot of things can be associated with MS. And it's very easy to fall back on Dr. Google and the internet and you put in new symptoms, and MS may come up. The one that we hear a lot about is people who've got pins and needles or those sort of altered sensation feelings, which certainly can happen in MS. But they're not unique to MS. So, in the first instance, go to your GP and explain the symptoms you're having and see what they can suggest, it might be that they can sort of diagnose something or prescribe treatments that actually turn out to be effective, and that's fine. If they can't, if it's something that the GP can't identify, they can refer you to see a relevant specialist. And if it is considered that MS is possible, that specialist would be a neurologist. And we would suggest trying to ask him to be seen by a neurologist in a hospital with MS specialist services so that you've got competence that they know, that they recognise the condition. And you've got more confidence that if they say it probably is MS or probably isn't MS, that they know what they're talking about. If you want to know where the hospitals with MS specialists are, there's a map on the website. So hopefully, you can be referred to the teams there and go through the processes that we described earlier, by way of diagnosis.

Helena
I'll pop a link to that in the show notes as well. So, if if people have questions about them, and I mean, obviously people are trying especially now in in the strange times we're living, it's quite hard to see your GP or get a hold of hospital appointment. If you have questions about MS, meanwhile, turning into the MS Trust is a good idea. So, tell us just quickly what is it that we actually do at the inquiry line.

Simon
The inquiry line is there to help people sort of learn more about MS at any stage of MS, we're not a medical service. So, we can't diagnose you and we can't give you a medical opinion. But we can sort of help you learn more about the condition and equip you so that when you get to talk to a nurse, or a GP, or a neurologist, whoever, you've got a bit of information behind you and you can get the most out of those appointments and get a better understanding of what's going on.

Helena
And there's also loads and loads of information on the website for people to read about. I mean, we've mentioned, we did mention them and some of the symptoms but, I mean, the list is so long it will be a very long podcast to go through them all but there is a section on the website where you can go through and look at some of these symptoms and there's a lot to learn on there.

Simon
Yeah, I'd probably suggest, we've got two sections that are probably best if you're concerned that you've got MS. There's a page called “Worried you've got MS”, which talks about how MS is diagnosed and sort of ways to approach talking about MS at a very early stage. Then we've also got a section for people who have recently been diagnosed which tries to present the information in manageable chunks. It's very easy to suddenly throw yourself in the deep end and MS is such a wide-ranging condition that there's probably more information that's helpful on day one, so the newly diagnosed pages and the print version of them, which is a couple of books called Making Sense of MS, are probably useful stepping stones into the pond of MS, rather than just sort of throwing yourself in.

Helena
That sounds like a good approach. Thank you so much for chatting with me today. Simon, you might get lots of people calling you up now asking questions.

Simon
Yeah, and people are very welcome to contact us. The inquiry services are staffed from 9 to 5 on weekdays. And we also got an email address so you can ring us on 0800 032 3839 or email us on ask@mstrust.org.uk. And we'll see what we can do to get you the information that you need.

Helena
Thank you so much. Now, if this was a commercial podcast here is where there would be an advert. But as for a charity, we don't do that. So instead, we'd like to take the opportunity to tell you all about our fantastic resources for people with MS.

Emma
Our website, which is mstrust.org.uk has tonnes of information and resources for people affected by MS and living in the UK. As Simon mentioned, we also run an MS helpline that you can reach on 0800 032 3839 or you can email us at ask@mstrust org.uk and we'll get back to you as soon as possible.

Emma
So today, we're very lucky to be joined by Hugh Nibloe, who is a Wheelchair Curling World Championships silver medal winner and Wheelchair Curling Paralympian for Team GB, and he's just going to talk to us today about his experiences of MS.
So, can you just start off by introducing yourself in your own words and sort of talking a little bit about when you first found out you had MS, maybe some of your first symptoms?

Hugh
I'm Hugh Nibloe most people call me 'Shug'. I had my first symptoms back in 2005. It was my vision that went. I had blurry vision and I had double vision at times. I went to an optician, and they said I had to go see somebody at the hospital. Then my legs started to go. I was at the football one night and I was walking back to the car, and I tripped, and I thought it was a hole in the ground but as the weeks went past and I realise no it wasn't, my legs weren't working right. I went to A&E on the Friday night, and they said I had to see my GP. I went home that night and tripped on the steps and broke my foot, my metatarsal. So, that laid me up for a couple of months and during that time my symptoms got worse, and it got to the stage I couldn't even get out of the house. I had to sign off work and everything. I couldn't get out the house and my GP came round. He was really good at the time. He's moved to New Zealand unfortunately, but he was brilliant. He come up to the house and he just said “No, I'm checking you into DGRI (editor: Dumfries & Galloway Royal Infirmary) straight away”. So, I went down to the hospital in Dumfries the day after and they told me straight away that they thought it was MS and then I had the lumbar puncture and the MRIs and everything and it sort of confirmed that that's what it was. So, I've been living with it now for 16 years or 17 years if you're counting symptoms but 16 years since my diagnosis.

Emma
So, it sounds like you had quite a few symptoms; did they all sort of come at once?

Hugh
No, it was my eyes what was the first thing to go, and it was probably about two or three months after that that my legs started going. But they were the only two symptoms that I had in that time. Everything else was just normal. It was just my legs and not being able to walk. So that was my big fear. That was the terrifying bit. My eyes I can live without I thought. I don't mind having to wear glasses and things like that. But when my legs started going, I knew there was something wrong.

Emma
Yeah, because people's experiences we find, obviously vary quite a lot. And that's just the nature of MS. But as you say, when it's your legs and your eyes you notice those. It's not like a little niggling one. They're quite noticeable.

Hugh
Yeah, definitely. If it'd been one, I'd probably have just plodded on a lot but because both were happening, I was like, 'ah well, definitely something going on here'. I actually had an appointment for the neurologist, and it wasn't until March 2016 and then it actually it was whilst I was in – not 2016, 2006 – and then whilst I was in the hospital it got put back to April. So, if I hadn't been in the hospital, it would have taken six months I think from when my GP referred me to the Neurologist to when it was going to happen. So, it was actually quite good that I had a good GP who sent me into the hospital and got the test and everything done, so I was fortunate for that.

Emma
That is good to hear. So, would you say that your diagnosis from your first symptom to, obviously receiving that news was fairly quick?

Hugh
It was probably about eight months in total from my first symptom. But from being referred to the neurologist it was four months. So, it could have been six, but it was only about four thankfully. So, I was actually relieved at the time because I was thinking it could have been something much worse kind of thing, like it could have been a tumour or something. It could have been a death sentence basically was what my big fear was when I was getting the symptoms and that. So, to be told it was MS, I wouldn't say I was jumping for joy but – well, no, I wasn't able to jump – but I am bit relieved it wasn't something terminal.

Emma
And when you found out about the MS, was MS something that you had heard of before, did you know a lot about the condition?

Hugh
No, I didn't know anything. I've got no family or close friends or relatives or anything that have MS so I had no idea what it was and it was just at the start of the sort of internet phase of things so you couldn't just go on your smartphone and look it up and things like that so I to wait to I got home and dial up – it was still dial up internet at the time – and go and research and king of things. But I was fortunate that I had a really good MS nurse at Dumfries & Galloway, Liz Clarke. She's retiring, but she was brilliant, and she helped explain things to me and reassured me and things like that and sort of what the pathway forward was going to be and what it would look like with steroids and things like that. So, I was fortunate to have her looking after me and I'll be forever grateful for the things she helped out with.

Emma
So how did your health professionals describe MS to you when you were first diagnosed?

Hugh
The nurse, she was very reassuring about it all and my neurologist at that point, Dumfries & Galloway, wasn't very good at all. I was fortunate that my GP, same GP, ended referring me to Ayrshire & Arran NHS Trust where there was a Dr Matterson who specialised in MS.

Emma
And when you did tell, sort of, the close friends and family, how did you communicate that with them?

Hugh
Probably just matter of fact- 'I've got MS and hopefully I'll get my steroids and I'll get better and stuff and then that'll be me and I'll be up and about' and I was sort of on a bit of a high in that I wasn't given a terminal diagnosis or something so at the time I just got on with things and yeah would have been matter of fact and just 'I got MS and I'm not worried and I'm just going to go about and see how long I can say strong for'.

Emma
Do you remember if they had any sort of questions or if there were any sort of confusions?

Hugh
I don't think there was many questions. I think my mates especially would just have been like, “eh right, nay bother” but my mum I'm sure I know behind the scenes when I not there I'm sure it affects my mum quite a bit. She'd go and did her research and everything. But my dad's very much like me he like 'ah well, he says it's alright so it's alright'. But I was just very matter of fact, and nobody really questioned me. Well, at that time they probably knew more than me about it, so they didn't worry about it, other than my mum I don't think anyone really worried about it they were just happy that I was alright with it.

Emma
So nowadays obviously you mentioned that you went through the treatment to sort of halt the progression of your MS. Do you experience any different symptoms to those that you did when you were first diagnosed or are they fairly similar still?

Hugh
Compared to when I was first diagnosed, I can't walk now. I'm in a wheelchair 24/7. But other than that, my vision, and things, it’s been fine ever since that the steroid treatment. I do need glasses now for when I'm driving. But other than my legs and I get high tone in my legs and a lot of spasticity and things in my legs. Other than that, I seem to be alright. My upper body seems fine, my arms and things like that. So other than flying about in a wheelchair and getting a bit tired every now and again. I don't know whether that's turning 40 of if it's MS related but other than that I seem to be fine. If someone gave me the power to walk again, I would be back to normal but 'hey ho' it's just something that fortunately I've still got the use of my arms and my fingers and things like that. My dexterity is not as good as it used to be, but I don't know if that's just me being lazy and not wanting to write things down and stuff but yeah no I'm alright, I'm happy with, I'll settle for what I've got and things so if they told me that this is me for the rest of my days, I can live with that.

Emma
And obviously we talked about the use of your wheelchair and things. Obviously, there are a lot of stigmas around you know when people first are diagnosed with MS, one of their pictures in their head or questions they have is 'will I have to use a wheelchair'? Did you find that you had to overcome some of those barriers but maybe now, I don't know, how do you feel in terms of that, do you feel it's given you a different perspective or given you some new freedoms that maybe you didn't expect?

Hugh
Yeah, it's definitely been doors open because of the wheelchair. There's, well, you said I'm a Paralympian and things now. You get pretty decent parking with your blue badge. You've got other highlights of it. You get music concert tickets and football tickets and stuff with a companion and things so there's definitely things like that. But there is, like I said before, I tried to keep walking as long as I could. It just became an absolute effort to walk five, 10 metres, having to put on splints and different things and it just got to the stage where it just got ridiculous and I just had to accept, no, it would literally take me two seconds to push but I'm spending about five, 10 minutes trying to put all the different stuff on and then get all the struggle and taking five or 10 minutes to walk that length. So I was lucky that I ended up, when I ended up in a wheelchair I had a bit of time where I was in the house not doing anything but then finding curling and being in amongst other wheelchair users and I learned from them and I thought that was important because if you're just given a wheelchair and you've got no nobody around you with any sort of information about the wheelchair use or even simple things like how to put it in your car and how to get out the car and things like that and turn controls and things, it just, it made such a big difference meeting a group of people and things like that to learn about using the wheelchair and just different things like what's the best tyres and frames and things like that, so I was lucky in that sense. But I wouldn't say that when I ended up in the wheelchair, I looked at it as positive but looking back now I should probably have accepted my fate a wee bit earlier and tried not to allow that stigma to affect my thinking on it and realised that it's what's best for you. You can be in a chair then just sort of I would say, I don't want to say walk as long as you can, do as much as you can for as long as you can. I would give anything to be able to walk, just get up and walk to my front door. I'd give anything just to be able to do it. But I guess at the same time you've got to look at your own self and your own wellbeing and what's going to be best for you. And hopefully everybody will have that MS nurse or physio or specialist that will advise them and their information will be good I'm sure to let people know what's best for them and just kind of go along with it and accept that they are going to, they're telling these things because it's right for you. And I know, I know when I was doing my walking and stuff like that my physios were saying that you should maybe try in the wheelchair, maybe the wheelchair's going to be better for you in the long run and thing and they sort of broke it to me gently and things like that. I'm lucky that they were there to give me that hope and things so, it's definitely a stigma around it but, yeah, I'm quite content in it now. I've been in it long enough now that I don't think anything of it.

Emma
And you mentioned sort of meeting other people in a similar community in a similar space and things. Where did you go to find out about other wheelchair users and people with MS in a similar position to you. Was that something that your healthcare professional suggested or somewhere online?

Hugh
It was, I was sitting in a pub playing dominoes and the Stranraer wheelchair coach, curling coach, Brian Burke came in, unfortunately he's passed away, but he came up to me in the pub and asked me if I fancied trying wheelchair curling and I was like 'yeah', no idea what it is. I knew what curling was, but I have no idea about wheelchair curling and I went along and I started dark. And I met the people in Stranraer at the club. And then we ended up playing at the Scottish Championships and things. So I met other players. And then, that grew when I, obviously getting in the national squad and things like that. Meeting more and more people and they're more informed. I think that maybe it's something that needs better advertised or something as to maybe have that sort of community and be able to, because I've got Gregor Ewan who I play with he's, we end up sharing a room at the time because he comes from Elgin and I come up from Stranraer so we have to share a hotel together. But he's so informed with wheelchairs. He’s so mechanically minded and things like that he's been brilliant at telling me things that I need for my chair and telling me things that would make my chair better and just little things like that. It would probably be good having an online group or something. Just have that discussion and where to go, and where to go in the NHS and things like that to get the wheelchair and stuff like that. Because initially when you get the wheelchair, it's a tank basically, what you get given. And in the end I was told no go back to WestMARC (Editor: WestMARC, West of Scotland Mobility and Rehabilitation Centre) and say that you want a light wheelchair. So, I had to do my driving test and stuff like that to ensure that I could handle it. And it makes such a difference instead of lifting something that's 18, 19 kilos into your car, something that's weighing about 12 kilos and things. And just pushing it about and energy efficient-wise and things, it makes a huge difference. But if I hadn't been involved in the curling I'd probably still be sat about here in a tank. And, yeah, I think it's something that we could maybe do a bit better is things with wheelchairs and what's best and where's best advised to go to. I know that obviously it's different throughout the UK with different wheelchair services and things. But I've quite a good relationship with my wheelchair services up here, with WestMARC. I've good relationships with them over the years. So unfortunate but I know that there's lots of people that'll won't know what to go and ask for or how to go about it so it's definitely, it's something that I was lucky that I fell into that group of people that knew what to ask for and what to get, what's best.

Emma
So we know that MS is such a varied condition and sort of no two people will experience the same symptoms or the same severity of their symptoms either. As someone who is in that public facing, not role, but someone who is facing into the public as a Paralympian, do you feel a certain level of pressure to represent different elements of MS? Because we know from experience that people like Kadeena Cox who's also a Paralympian often faces some criticism over ‘oh you know you're running every day in the Paralympics but you can't really have MS because surely your fatigue would affect you or various different symptoms would prevent you from being successful’. Is that something that you find a challenge?

Hugh
I've been fortunate because my sport where wheelchair curling it's, if you're in a wheelchair you're kind of, everybody's the same, so you don't know what one person suffers from to the next person. So, I haven't faced the same sort of questions, the same sort of issues over the years. I mean, I have every admiration for Kadeena, and I would love to be in her shoes and things and be as good athletic-wise and she is. And she does a phenomenal job and she's making the most of everything she's still got use of. And I think people who are critical of her should maybe take a step back and think that it could only be, it might be a few years and she might be in a wheelchair or things like that. I think it's just important to use everything that you've got and everything you can whilst you've still got it. And I think she's done a phenomenal job and definitely huge respect for her and anybody else with MS who's out doing it. Like you say, everybody's got different symptoms. I can't walk. That's my symptom. And I make that most of that. But I know a lot of people with upper body issues and things like that and I'm not going to be angry at somebody using MS as a reason when they can walk and run about and stuff like that. So, I'd hope that people wouldn't be saying well he can't have MS because his upper body's fine and things like that. It's, like you say, everybody's different. I'm different every day. I can wake up some days and I'm absolutely shattered, and I just can't face the world. And then there's other days I wake up and I'm bright and breezy and ready for whatever the day holds. So, I mean it's different things day to day. It's just important to just make the most of every day and make the most of everything you've got for as long as you've got it. I know people in their 60s, 70s, 80s and they're still walking about with a crutch and things like that, and I think I was in a wheelchair before I seen my 30th birthday. So, it's just so different and stuff like that but we're all in the same sort of boat. We've all got things that affect us and it's important to support everyone because you don't know what's going on and what's going on behind the scenes. I don't know what Kadeena’s routine and things behind closed doors and what symptoms she maybe suffers from more than others. People should realise that you don't know. You see the face on the TV but what goes out, what goes on, I know that with curling, with us, 99% of the things we do, nobody ever sees, so you just see, especially for Kadeena, you'd see her for a very short period of time on the TV because she's so fast, so it's important to just take everybody at face value kind of thing. And I know that, I know the scrutiny that goes on behind the scenes for classification and things like that. They don’t just say - You don't just show up and say ‘look I've got MS, I want to do this’. There's a bit more to it in classification terms. I know I had a bit of hassle for classification. I had to get my legs twisted and pulled and things like that to make sure I wasn't telling fibs. I had to show, I think I had three different specialists who wrote letters to say that I had MS and things like that and that I couldn't walk. So, there's quite a lot in the athletic world that people won't see. But you do have to go through a few tests and different things to make sure that you are eligible and she's definitely eligible to compete in her stuff so I don't think that she should face any criticism at all. And all admiration to her for being that person that's making the most of what she's got and taking every opportunity she can.

Emma
So just to finish up then, do you have any tips that you would give to someone who was newly diagnosed and sort of struggling to communicate MS with other people?

Hugh
I think, if you're struggling, I mean your nearest and dearest or, I'm fortunate, I've got parents who love and adore me, and I've got a brother and sister and close friends that I can share anything with, and I've always had that so I'm fortunate that way. But, I guess if you've not got that support network then health professionals are brilliant. I mean the NHS has got so many good people in it. And I know that my MS nurse, back in the time, back in the day when I was diagnosed, and I'm sure that the MS nurses across the country, I have absolutely no doubt, will all be absolutely brilliant, because everyone I've met has been brilliant. Even sitting, speaking to them and they can refer you to different paths and get you speaking to different people. I think putting full trust in these people, the MS nurses, I know that the consultants and the specialists they are maybe a bit more difficult because they have obviously got a lot more sort of way high up in dealing with things, but the MS nurses and stuff like that that I've always met, they've always been there and always had time for you. I've had their phone numbers and things like that to get in touch. I think that they are a brilliant output for people to turn to. And then there's the helplines as well. I've never really used the helplines so I can't really speak for them, but I imagine they're brilliant. But I would definitely say that if you've not got a really close support network at home then I would definitely go down the route of speaking to an MS nurse and getting the help and advice from them and I'm sure that they can, whatever area it is, I'm sure they can push people towards certain groups and things like that, that might help, so definitely speak to them and reach out to the MS community because like you say everybody is different but there will be loads of people that have the same symptoms or same concerns and things as you, so reaching out to chat forums and things like that and speaking to people on that would definitely be a good thing for people to do.

Emma
That's brilliant. Thank you so much for joining us today. And we're back.

Helena
It's been very interesting podcast to listen to today. I think there's been a lot of information to take in both from the you know, the MS 101 lesson with Simon and listening to Hugh’s story. I think I do really like listening to different people with MS stories about how they got diagnosed because I’ve worked here for many years. And no story is the same as another one. And I think it's important to tell all the different stories. It's hard to do a podcast called ‘What is MS?’ and sort of have one person represent what is MS, because everyone's MS is very different.

Emma
Yeah, I think if we tried to cover all of the different experiences people have with MS that this podcast would probably go on for a couple of days rather than an hour or so. So yeah, it's quite a challenge. But if you want to read about some of the different experiences people have with MS, including their sort of diagnosis journeys, we have got lots of different personal stories on our website.

Helena
MS is sometimes referred to as the snowflake condition, not what people like to shout about on Twitter about snowflakes, but actual snowflakes because no person's MS is the same as another person with MS. And as Simon spoke about, the fact that MS is caused by the demyelination or attacks on the brain and the brain controls everything. It's no wonder that it's so different from person to person because it all depends on where these attacks occur.
Now if you want to learn more about MS, the ins and outs of treatments and various .symptoms, our website is a great place to start. We produce practical, reliable evidence-based information online and in print and video too, covering a whole range of topics from lifestyle tips to MS symptoms. We've also got some great information on explaining MS to kids, some bits on drugs and treatments as well.


And the website was a godsend for me when I was diagnosed as I just wanted to read anything that I could get my hands on. I know a lot of people take on information in different ways. And some people might want to dip into just the bits that really matter to them. So, I said on the website, it's really great for that you can just sort of alphabetically look for the symptom or treatment or any other things that you would want information from start there. And then, like Simon mentioned in the thing, if you are newly diagnosed, there is a whole section for the newly diagnosed on the website as well. And speaking of information, if you're listening to this during MA Awareness Week, we're running a series of webinars covering topics such as fatigue, working, MS cognition issues, and a few more. So be sure to check them out. You can sign up at mstrust.org.uk/msaw.


We understand that there might be quite a lot to take in after this podcast. So, remember that if you have any questions about MS or want to talk to a real person, rather than just looking online or reading a publication, we're here for you as well. Our inquiry service, as we mentioned, is available Monday to Friday, except UK bank holidays, from 9am to 5pm. And outside of these hours, you can leave us a message and we'll get back to you as soon as possible. The number for that is 0800 032 3839 or email us at ask@mstrust.org.uk. And it's available for anyone who wants to know more about MS, not just those currently living with the condition.


And you can also find us on Facebook, YouTube, Twitter and Instagram and you can find this podcast on Spotify, Google, and Apple podcasts and Amazon Music. Get in touch and like they say, ‘like and subscribe’. But yeah, do get in touch and tell us what you thought about this podcast and let us know about topics that you'd like to hear in the future. And if you are new to MS, be sure to check out some other episodes of Multiple Sclerosis - Breaking It Down. And we would finally like to say a big thank you to Ant Chapman Audio for the music of this podcast.
Thank you.
Thank you, bye.

*Figures correct at the time of publication. New prevalence figures have since been published.