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Foreign.
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Welcome to Breaking It Down, a podcast from the Ms. Trust. I'm Nick and we're also joined by our host, Helena. Hi, Helena.
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C
Hi, Nick. Myself and Nick, we work at the Ms. Trust, which is a charity for people affected by Ms. In the uk and we're here today to help you make some sense of.
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B
Ms. That's right, Helena. Today we're recording our first podcast of 2025. We're actually going to be kicking off by looking at Ms. Myths and jargon.
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C
And it's funny that we're recording this this specific week because it's been a lot of talk in the news about fact checking or rather the lack of fact checking on social media. And you know, we, in this day, we do spend an awful lot of time on social media, so. So, yeah, it's really kind of really hammering home the importance of knowing what's a fact and what's a myth and what's fiction. So I think this podcast will be rather timely.
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B
Definitely agree with that. Yeah. And so this time around we're going to be talking with Simon from our helpline team and Stephen who works as a fundraiser at the Ms. Trust and he also lives with Ms. Himself. So we're going to be talking about all of the different myths that they've heard over the years and look to see what's fact and what's fiction in.
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C
The world of Ms. We also hear an awful lot of jargon and much like the Oxford Dictionary puts out the list of new words of the year, I always find that very interesting to hear. And our A to Z on the Ms. Trust website ends up with an awful lot of new terminology every year as well. And there was some jargon that popped up last year like pira and raw and the aptly name, pardon my French, crap gap, which are some of the words that I asked neurologist Kate Petherum to explain to me. It was a little bit like a January back to school session for us, I think.
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B
Yeah, I bet. So there's lots to get to in this show. So I think without any further ado, we'll jump in now.
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C
Ms. Jargon can be very confusing and new words keep on being popping up and being used. So to try to help us out today to detangle some of these confusing terms, we have neurologists Kate Petheram with us today. Hi, Kate.
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D
Morning, Helena. You well?
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C
I'm well, keeping well, looking forward to quizzing you on some of these terms that we're trying to, to understand. So we actually recorded some videos with Kate in the past where we actually, we asked some of these like, jargon type things before. So we discovered that she has a bit of a talent for this. So that's why she was my first port of call when we wanted to record this podcast.
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D
No pressure, no pressure.
- [02:55]
C
So we'll start with something. I was going to say easy, but it's probably not. Could you explain the different types of ms?
- [03:04]
D
Certainly. And yes, it's not as easy as it sounds, I think. So. I think this is a common question and people often ask me, what type of Ms. Do I have? And it sounds like it should be a really easy question, but it isn't always so. Traditionally, Ms. Has been split up into three main types of Ms. And these are the types that people are aware of and we still talk about them now. So you talk about relapsing, remitting ms, secondary progressive Ms. Or primary progressive Ms. And I'll go on a little bit because some of the other terms we're going to talk about kind of slightly debunk those separation into these different types. But essentially relapsing, Remetting Ms. Describes the early stages of Ms. When people, people tend to present with episodes of neurological dysfunction. So a relapse that generally classically comes on over a few days or weeks and then often stays the same for a bit and then gets better, and that's kind of a relapse. And that relapse is due to inflammation that's going on in the brain or spine. And depending on where that information occurs, depends on the type of relapse you have. So if occurs in the brain stem, you might get dizziness or double vision or some nausea. If it happens in your optic nerve, then you might get an optic neuritis. So that's a relapse. And then generally those relapses remit and you get better. And then you may never have another relapse again, or you may have a period of time without relapse, and then you might have another relapse which then occurs and then gets better again. So that's relapsing, remitting Ms. And in a proportion of people, and we often talk about untreated people, a lot of people will then go on to develop what we call secondary progressive Ms. So that's when you don't get relapses, but you get a progression of disability. So your disability gets worse without there being any relapses. And I think would become. And then primary progressive Ms. Is where you start, you get progression of disability Right from the start. So there's no relapses at all. I think we're starting well. I certainly. I feel very strongly that we should be getting away from these very strict definitions and splitting Ms. Into different groups. And we do recognize that Ms. Is a kind of a condition, one condition, but with different phases. So early on in the. In the condition, not long after it starts, or when you're, particularly in younger people, you're more likely to have relapses and so you're more likely to have inflammatory activity going on in your brain or spine, which causes relapses. But we also recognise that people can have a bit of progression right from the start and we also recognise that people can have relapses quite late on. So as you move through the disease, we can, because it's a bit of a phasic disease. If you move through it, then you're much less likely. That inflammation, that likelihood to have relapses calms down, so your. The disease becomes a lot less inflammatory, but it becomes that. That damage. Unfortunately, that scarring that's on the brain and spinal cord doesn't go away. And that damage done then catches up on people. And that's why people progress and that's why the later stages, what we've traditionally called secondary progressive ms, is more characterised by a worsening of symptoms, progression of disability and less likely to have relapses.
- [06:37]
C
That makes sense. The next word I have on my list is a simple definition of relapse. Now, you've gone into explaining relapses a lot, but we do find that people struggle to explain it to their friends and family. What is a relapse?
- [06:53]
D
So I think very simply, a relapse is due to new inflammation within the brain or spine, and that can be, you know, that can be a clinical relapse. So that tends to present as new symptoms. So as I said, new symptoms generally coming on over days, weeks or very occasionally, months, that then stabilizes and gets better again. And most relapses people will recover from. I think there's a slight, often misconception that we know that people with Ms. Symptoms can vary and people can have flares of symptoms, so days or weeks where their symptoms feel a lot worse, but those symptoms aren't new and different, and that's due to previous damage kind of showing, you know, rearing it that ugly head, as it were. And that can often be due to infection or stress or being over, you know, over fatigued. But that isn't necessarily a new relapse and so a flare of symptoms, very common, we see it all the time, is quite different to a relapse, which is new symptoms, symptoms caused by inflammatory activity in the brain or spinal eyes.
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C
And then people sometimes talk about pseudo relapses as well, don't they?
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D
Yeah. So pseudo relapse is kind of what we think. And this is why when a person with Ms. Contacts our service with new or different symptoms is that the first important thing is to exclude infection. Because if people have an infection, then that will definitely bring back to the forefront previous symptoms from a previous relapse. And don't forget that relapse might have been 20 years ago and you've kind of almost gotten it. And so that's why it's so important to exclude infection before and often. You know, I think in this day and age when a lot of people are on highly effective disease modifying therapies, we really want to act on relapses, not just to kind of treat them and give steroids if appropriate, but also that might be an indicator that they need to start or change their disease modifying therapy.
- [08:48]
C
Now this next one, I've been within the Ms. World for so long and I still cannot pronounce it properly, so bear with me. Ollie. Go. Clonal bands, is that. It should be said farther.
- [09:01]
D
Oligoclonal bands say that quick time. So we often call them, we want to shorten it to OCBs. So you'll often see that written down, oligoclonal bands. So these are proteins, so immunoglobulins essentially that are. So immunoglobulins, which is what oligoclonal bands are, are proteins that are used by the immune system to recognize viruses and bacteria as foreign material. So they're a kind of normal part of our, our immune system. But we know in Ms. That the immune system goes wrong and starts reacting against our own body. And in the case of Ms. It reacts against the myelin in our brain or spine. And so what we do when we're looking or checking for oligonal bands is we're looking for them in the spinal fluid. And then we take at the same time, if you have a lumbar puncture looking for them, you'll be looking at the blood at the same time. And what we're looking for is oligonal bands. So these immunoglobulins, these immune, these clever proteins that are being produced just in the central nervous system and not in the blood. And that indicates to us that there's something wrong with the immune system going on in the brain. And that's, you know, most common reason for that is Ms. 90, 95% of people with Ms. Will have what we call unmatched oligonal bands. So that's these oloclonal bands in the spinal fluid that aren't in the blood.
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C
Right. Now you already mentioned that you like to abbreviate things and certainly come across that there's a lot of abbreviations. So we're going to jump into a few of these ones, starting with cis.
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D
So CIS stands for clinically isolated syndrome. So this is the, the first clinical symptom suggestive of multiple sclerosis. And because of the change in the diagnostic criteria, we can often diagnose somebody with Ms. After they've had a single event. But if you don't have all the other features which allow a diagnosis of ms, you may still just have a clinically isolated syndrome. So perhaps the most common clinically isolated syndrome is optic neuritis. So inflammation of the optic nerve, which often presents as pain on eye movement and reduction in vision in one eye. But you can have a clinically isolated syndrome kind of anywhere. And if it's just on its own, without the kind of other features such as imaging so scans or the lumbar puncture results that allow a diagnosis of Ms. That's Clintonly Isaiah syndrome.
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C
Fantastic. And does that mostly go on to become Ms. Or does it. Not always.
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D
Yeah. So not always, but mostly, yes. So when we see somebody with a clinically isolated syndrome in clinic, say I saw somebody with an optic neuritis and I get a referral from ophthalmology and they've not had any tests yet, then the risk of that being multiple sclerosis is about 50, 50. If you go on to do an MRI scan and that shows the kind of lesions that we are familiar with that look like MS, then that risk goes up to 80 or more percent. But that still leaves a kind of 20% chance that it's not going to be Ms. But I think things are changing and we are kind of looking at, and I suspect that data that's quite old data, and that might end up being. Those numbers might change. So you're more likely to have Ms. With a suggestive scan because we're trying to diagnose Ms. As soon as possible, to allow treatment as soon as possible, but being aware that there are still people that will just only ever have one attack.
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C
Yeah.
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D
And it's that balance between not over treating those people, but not missing the opportunity to treat people when we're going to change their outcome.
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C
It's really interesting. We did a podcast about when they do trial where they're treating CIS with DMTs. Straight away, just to see the link now, we got ris.
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D
So RIS risk. That's the kind of new kid on the block, as it were, in terms of abbreviation. So radiologically isolated syndrome. So MRI scans were a lot more available now, and people are having MRI scans for all kinds of reasons. So headache, head injury, clinical trials, you know, healthy volunteers and clinical trials. And we see now that there are. We see people that have the imaging changes. So the changes on an MRI scan that look like ms, but they've never had a clinical episode that suggests Ms. So that's radiologically acid syndrome. And the new Ms. Diagnostic criteria, which is a whole podcast on its own, will include some. Because we know that a certain number of people with a radiologically isolated syndrome will go on to develop Ms. And there are certain risk factors which make you more likely to go on to develop Ms. And so in a carefully defined number of people with a radiological ISO, syndrome with a new diagnostic criteria will be allowed to be called Ms. As well. We'll be diagnosed as.
- [14:28]
C
As with the. The previous one. There was. We did have a podcast a while ago as well, where we did cover someone who did actually have exactly that happen to them because a medical student and had an MRI as a part of, you know, finding out how the equipment works and they spotted it, which then they later on did become diagnosed with Ms.
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D
So it's quite common. I think most Ms. Services will have a number of people within their services.
- [14:56]
C
Here's one that I feel like is almost like the buzz word of the year within the Ms. World. Pira.
- [15:03]
D
Pira. So progression independent of relapse activity. And I nearly kind of started talking about this earlier when I was talking about the different types of ms, because as I said earlier, we're kind of trying to break down that kind of slightly false separation into different types of ms, because we recognize, and this is where PIRA comes in, that progression can happen at any point in Ms. Now it's much more likely to happen later on, but it can happen quite early. And so. But. But all PIRA really means is that people can progress without having relapses. And that's what PIRA is. And that's a simple way of thinking about it.
- [15:44]
C
It's very straightforward. And so we do certainly see a lot of people sort of saying, oh, I did have another scan and it looks Fine, but why am I getting worse?
- [15:53]
D
Why am I getting worse? And that's, that's really common. And I think we don't fully understand all the mechanisms why people are getting worse despite not having new activity. And that's, it's almost certainly quite a messy combination of different things. And that's where loads of research is going on to define exactly what is causing what and how we, most importantly, how we impact and change that.
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C
And the next one, raw.
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D
So RAW kind of relates to PIRA because RAW is the other side of how people develop progression, develop disability in Ms. So relapse associated worsening. So when you're looking at that kind of spectrum of how people develop disability with ms, you can either have raw, so relapse associated worsening. So you go have a relapse. And I talked about relapses, getting better and remitting. But I'm sure a lot of the listeners will recognize that they didn't completely recover from a relapse. And that's really common. And so, and I often say to people in the midst of or just after relapse that these symptoms may get a bit better, but you may be left with residual symptoms. So I suppose ROAR is just saying that that's the worst thing which has been associated with this relapse. It doesn't indicate progression associated with relapse and that new inflammatory activity.
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C
Let's throw this one in the mix as well, because I still feel like there's a bit of overlap here. Smouldering Ms.
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D
So smouldering ms, again, it's all in the mix a bit. So again, that is this recognition that Ms. Isn't just about relapses, which is what we've known that for many, many years. But I think it's becoming much more to the forefront of recognizing that. And I think smolding Ms. Really specifically talks about the fact that I think the next kind of maybe term will come onto this as well, that there are lesions within the brain or spine that aren't completely inactive and continue to smoulder. So the analogy I like to think of, and not uncommon, is that if you think of a relapse as being like a big fire within the brain or the spine and the immune system does quite well at putting out that fire and so the flames go away. And that's what we see when, you know, relapse recovers. But there's an edge, there's a smouldering edge of ongoing inflammatory activity which, you know, when you've put out A bone fiber the next day, if it's been a big one. There's still a bit of kind of activity around the edges and that's what we're seeing in these chronically active lesions. And suggesting that there's, whilst there's a lot of the inflammation or the immune kind of badness is going on in the blood, it is also going on in the brain itself. And the challenge is that that's very difficult to target with our current disease modifying therapies which mainly act on the inflammation or how we alter the inflammation occurring in the periphery in the bloodstream.
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C
Right. So cvs.
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D
So central vein sign. So this again has come. It will become more and more familiar to people because it's part of the new diagnostic criteria. And it describes an imaging finding on MRI scans that recognizes that Ms. Lesions form around a kind of vein or a venule, so a small blood vessel in the brain. And so when you look at an Ms. Lesion you can see a little blood vessel in the middle of it. And that's highly specific for Ms. Lesions. And the reason that they're useful is that they can help differentiate between other things that can cause white matter. So lesions on the brain. So we see, you know, there are other causes for having these high signal white matter lesions on the brain, such as vascular disease, so stroke and migraine. But yet. So these central vein signs are specific to Ms. The challenge with the Ms. Is that they need quite a high powered scan, ideally to identify them. So I think when we, when we're going to need them for diagnosing ms, for example, we might, for example, my trust, I work in doesn't have a 3 Tesla scan, so some people might need additional scans and also that they're quite time consuming to evaluate because you need to look at each lesion and determine the proportion of lesions that are have a central vein sign and those that don't. But I think, you know, it's anything we can do to make the diagnosis of Ms. More specific as well. Because I think the danger is with the new diagnostic, you know, with the, with the strive, which is really important to make the diagnosis earlier, we don't want to make it less specific and we don't want to diagnose Ms. Where that isn't the cause of.
- [20:46]
C
Yeah, of course. And I'm guessing the MRI scans are only getting better and better with the years, but I guess they're still extremely expensive for hospitals to, to acquire.
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D
Yeah. And they're excited and also it's the manpower that's required to report MRI scans. And you know the volume of MRI scans that we do. Yeah. And the, just the number is the radiologists as much as anything that need to be, be able to then be experienced and knowledgeable about these techniques as well.
- [21:17]
C
So this is something that we might be able to see. AI help out maybe.
- [21:21]
D
Yeah, no, I think that's a big, a big area for AI to be useful for is looking at scans for sure.
- [21:31]
C
So I think we're now moving on a little bit more to Ms. Symptoms and I think this is one that we certainly see people talk about quite a bit ataxia.
- [21:44]
D
Okay. So ataxia is a term, it just means poor balance or off balance. And so it's not a specific term and it can have lots of different causes, but it's obviously very common in Ms. Yeah. And so I suppose one of the commonest ataxias is a cerebellar ataxia. So the cerebellar is the bit at the back of the brain. I tried to make my eldest son, it was the first word I taught him to say. But anyway, so cerebellar is the back of the brain and it controls our balance and our coordination. So if you imagine we probably all have, well, a lot of us will have had a temporary cerebellar ataxia because it's a bit. The alcohol effect.
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C
Oh yeah.
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D
If you can imagine someone that's really drunk and they're slurring their speech and their walking is quite kind of wide faced and off balance. And actually a lot of patients with Ms. Do say, you know, what's one of the most troublesome things is that because of their balance, people think they've been drinking.
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C
Yeah.
- [22:48]
D
But it's just the reflection that the cerebellar has had some damage. And we know that Ms. Can, there can be lesions within the cerebellar that lead to this ataxia and it can be very, very disabling for people and it's quite difficult to treat. But often physiotherapy and kind of gait retraining, core strength and stability, really important. So I often recommend dodrum pilates just because the stronger your core is, the more likely you are to be able to balance better. And the other. So that's a, one common form of ataxia and then the other common form is something called a sensory ataxia. And this might happen if you've had a spinal cord attack, for example, and you've got numbness and lack of sensation in your legs. And so then you have this sensation, you don't really know where your feet are. And that can make walking very challenging because obviously not knowing where your feet are, you know, it offsets your balance. So. And that's often under recognized as well.
- [23:49]
C
We're sometimes seeing people comment on this that it sort of can almost come into a bit of clumsiness as well. So it's not. And. And that's certainly something. I feel like my balance can be bad on some days, but I certainly notice that I will walk into things or I will struggle with getting you know, lids up and. And things like that. I drop a lot of stuff.
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D
Yeah.
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C
Is that ataxia?
- [24:11]
D
So it probably is partly ataxia. So it might be a combination of ataxia plus a bit of, I suppose, with the bottles and things, maybe a bit of weakness. But yeah, for sure, definitely ataxia. And I think, you know, you can get it in your upper limbs as well, like the sensory attacks in your legs, making walking difficult. If you. If you've got the same thing affecting the upper limbs. And that can happen with a brain or spinal cord lesion. Yeah, it's very difficult to judge distances.
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C
Yeah.
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D
And. And then that can very come across as clumsiness. But that's due to these messages not getting down quick enough.
- [24:44]
C
That would explain why door frames are always my enemy. And they always tend to bash into that.
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D
And then, dare I say I add a bit of perimenopausal asexia into that as well. And then I don't know, I can say that we've had that. Yeah.
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C
It's all going on at the moment. It's fun to be in your late 40s. Now, this one we certainly know a lot of people talking about, but not everybody knows exactly what sort of actually means by the terminology spasticity. It's a quite difficult one to explain, I think.
- [25:19]
D
Yeah. So spasticity from a medical point of view is that defines that stiffness or increased tone that comes from the mismatch of how the muscles are acting activated. So if you think the muscles that cause us using your arm as an example to kind of flex your arm, that biceps is much stronger than the triceps. So your default position is to have arms like this. And so when there's a kind of lack of the messages coming up and down, the body kind of goes into default mode. So it goes into flexion in the arms and then extension in the legs. And that's why you get spasticity and ms, because those messages are kind of reverting back to what our kind of baseline should. You Know what are kind of. Without the central nervous system, what our body would do and that. And it's kind of. It's a stiffness where there's a kind of. Because it can get stiffness in other neurological conditions, like Parkinson's disease, but it's a different type of stiffness. And so there's often a kind of stiffness, stiffness, stiffness, and then a release at the end of the movement. And it can vary and it can. And it can vary in the same person throughout the day. So I appreciate it can be probably very frustrating for people that maybe come and see us and they don't have a lot of spasticity, but then that can be very bad at other times of day. And we do recognize that. But it is important to differentiate it from spasticity to weakness, which is also very disabling. And other types of kind of pain and discomfort that can come with Ms. But spasticity can be very painful. And the pain that comes from spasticity might treat slightly differently to pain without spasticity, if that makes sense.
- [26:58]
C
Is spasticity fairly common within ms?
- [27:02]
D
I would say it is common, but I don't think everybody has it. So, yes, it is common, particularly I think if you've had a spinal cord. Any spinal cord lesions. But yeah, anybody with Ms. Can get spasticity. Unfortunately, the best ways to. Because it can range from mild to moderate to moderate, very severe. But the first kind of way I would always recommend treating particularly mild spasticity is through conservative kind of exercise, physiotherapy, stretching, and making sure those. You're moving those muscles and joints as much as possible and continuing to allow full movement through the joints as well, because otherwise the joints can become stiff and fixed. And then there are medications which we can provide as well, so things like Baclofen, dizanidine, to a lesser extent, things like pregabalin and gabapentin. And then of course, there's Sativex if all other treatments have failed. So. And then if people have still got very bad spasticity, then you can have intrathecal baclofen or Botox. Botox is generally quite good. If people have got a kind of just a few muscle areas that are particularly problematic.
- [28:20]
C
And if you don't have any spasticity, but you're worried about, like the site, the early signs of it, would that be sort of stiffness, then? That would be the first few signs, yeah.
- [28:30]
D
So often, I think I probably sometimes pick it up on patients maybe before they have. When I examine their kind of legs on the bed and there's a kind of bit of a juddering at the ankles, for example, or brisk reflexes. But people can have brisk reflexes out necessarily going on to have spasticity. Yeah. So stiffness spasms. So the kind of a jerky kind of spasm of the leg, particularly at night, that might suggest some underlying spasticity, but it would be very individual and different per patient, I imagine.
- [29:07]
C
Now, moving on to, I think apart from peer out, this was the one thing that people asked the most about when we were throwing these questions out on social media, the Ms. Hug. Could you explain the Ms.
- [29:20]
D
Hug? Yes. So it's really badly named, isn't it? I think when I did this video before, everyone's like, why do they call it the Ms. Hug? It's not huggy at all. So it describes this kind of a sensation of tight banding often around the kind of upper chest or abdomen, maybe even the lower abdomen. And it reflects the kind of. Often a spinal cord lesion, although we don't always find a spinal cord lesion. And it's caused by that a kind of spasm in the muscles, which has been caused by the slowing down of those messages coming from the brain through the spinal cord. If you think all symptoms in ms, pretty much all focal symptoms are all symptoms that can be attributed to a particular lesion are due to, to the messages slowing down through that lesion. And if you've got a lesion in your spinal cord, then that's why you get this kind of tight band like sensation. And it often can come and last between kind of seconds to minutes, sometimes hours before it then releases again. And I think it can be very confusing for patients, but also for healthcare professionals that aren't familiar with Ms. And I've had patients, and I'm sure, I think we've seen this on social media, that it's been misdiagnosed and is often investigated down a cardiac route or abdominal route. So looking at lots of kind of tests for abdominal pain or tests for chest pain, and I'm not saying that those aren't appropriate because obviously they're really important things to exclude. You know, a heart attack is something you definitely don't, you don't want to miss, and so it's often really appropriate. But I think if, if that has been appropriately excluded, then an Ms. Hug is often the cause of those kind of symptoms.
- [31:06]
C
We very often see that on our Ms. Trust Facebook group, people coming on and sort of trying to describe it. And it can really vary from person to person. I had it a few years back and for me it really felt like a very nasty stitch. It went from just being annoying to actually really painful. Well, whilst I've seen people, you know, people have it, I suppose I didn't have it on the side where my heart is. So I never really thought that there was anything to do with that. But it still feel, it made it almost feel like it's a little bit hard to breathe because it's kind of.
- [31:35]
D
It'S kind of that kind of difficulty catching breath.
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C
Yeah.
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D
And it can be like you just alluded to, it can be just on one side more than the other. That would be very in keeping and common.
- [31:47]
C
And I've seen heard people who've seen sort of had, had it in other places so it's been like around the head so it almost felt like they were wearing a tight one. Something.
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D
Yeah, yeah.
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C
So it's, it's. Yeah. We have more information on the, on the, on the website with it but as Kate pointed out, if you are afraid that anything would be relating to your heart or chest, you should go and have that checked out.
- [32:10]
D
I don't want to be responsible for any heart attack being missed.
- [32:15]
C
Here's another one that I'm not completely convinced I can pronounce properly but allodynia, so that comes.
- [32:23]
D
I love the learning the basis of words because I think it helps explain them. So I think it's from the Greek which allos which means other and dynia which means feeling. But what allodynia describes is a pain from a sensation that shouldn't be or from a stimulus that shouldn't be painful.
- [32:42]
C
Right.
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D
So for example, if you've got sunburn you might have a temporary allodynia because that means, well, most of us have been sunburned. And when you're putting clothes on or hot or water on you that makes it your skin painful when it shouldn't, that sensation shouldn't be painful. So that's what allodynia is. And you can get allodynia in Ms. Because, because like of the kind of mix up of the messages. So you're the signals which tell your body to interpret, you know, running water over your hand, they're coming from your hand up through your arm, but they're getting to that, that patch in the spinal cord or the brain which is interpreting those, which is required to interpret those signals and those messages are getting slowed down and muddled up. And so instead of being perceived as just water, it's perceived as something dangerous and painful. That valid in here?
- [33:39]
C
It's a strange one. Am I right in thinking that because we did a podcast on cold sensitivity that some people get really strong reactions to touching ice and things like that?
- [33:49]
D
Well, that's probably a similar thing. Yeah, yeah. Just a misperception. Your body is just misunderstanding the signals coming from the outside world because they're being slowed down through these. Through these patches of inflammation in the brain or spine.
- [34:04]
C
And staying on this subject, this is another one that's juicy to pronounce. Dysnesthesia.
- [34:13]
D
Oh, it's beautifully pronounced. So again, I think another Greek word, dis, meaning bad. Anesthesia, meaning feeling. So bad feeling, essentially. So again, this is this. And I think pins and needles is probably the lay term that most people are familiar with. And so often dysesthesia, pins and needles, very similar. But a bad, you know, a feeling that isn't nice is essentially what dysaesthesia means. And that again, same kind of basic cause as allodynia. Those messages are not being perceived as. Or you're getting kind of. Those messages are being ramped up. So instead of feeling nothing, you may be feeling pins and needles or when often people walking, you might feel like you're walking on glass instead of just walking. And that again, can be really horrible and really disabling and really frustrating to treat as well, because we can't, you know, as often say it comes along with some lack of altered sensation. And we can't, you know, we don't have medications that can give you back your sensation or can straighten out those. Those kind of messages. So what our drugs that we give for these kind of symptoms are designed to do is kind of dampen down our perception of these feelings.
- [35:32]
C
Yeah.
- [35:33]
D
And because of that, they're often very centrally acting drugs and they can then lead to side effects in terms of sedation and fatigue. So it's a, it's a really difficult balance between treating the symptoms and those sensations and lessening the impact of them sensations because they're not going to make them go away and then balancing that against potentially nasty. But not everybody gets side effects. Some people tolerate these drugs brilliantly and they're really helpful.
- [36:01]
C
It's one that's so difficult to explain to people. I can get it on the side that's mostly affected by my ms, but I get really sensitive if people are touching, touching me. And sometimes it's absolutely fine and other times it actually feels painful when they're touching me. And it's Sort of if it was there all the time, people might accept it. But then when it's just there sometimes, especially if I'm being tired or worn out, then it's really hard to sort of say sorry, I'm having a moment go away from me.
- [36:31]
D
And I think for those people that don't have Ms. Or if they want to explain it to people when we've all kind of lain on an arm and then had that horrible feeling of pins and needles when it comes back and it's a really uncomfortable, horrible feeling. So I often, you know, think, you know, I. Yeah, that is a horrible, horrible feeling to have all the time or you know, even regularly.
- [36:52]
C
It's the psychological aspect of these things. It can be very, very hard to get around. I, when I had the Ms. Hug, I also went numb in my heart, half of my torso. And it was really strange. You know, when you take your clothes off, for instance, it felt like you're touching someone else's body because it didn't feel like my body. And that was almost harder for me to deal with than the actual pain because it just made me feel a bit like associated.
- [37:15]
D
Yeah. And it kind of. And yeah, it's not surprising that. And then some people kind of develop even, you know, you can get functional symptoms related to Ms. Because our mind then starts expecting that and then you can get symptoms which aren't necessarily due to the Ms. Because our, our mind goes into overdrive and then misperceives other things even if there isn't an Ms. Lesion that's causing those symptoms. But you know, you can totally understand why if it's been triggered by such a horrible event like that, it's a.
- [37:46]
C
Very, very strange symptoms and yeah, and it's even harder to explain to people. Now the last question that I got, I don't even know if there is a nicer terminology for this one, so pardon my, my French I was going to say and that is crap gap. What is this talking about?
- [38:08]
D
So I think this is the term which is very common and that people describe and it's described in various different of the disease modifying therapies that in the time leading up to being due your next infusion and whether that be natalizumab or ocrevus and I seeing it in a few people with ofatumumab as well. Is it you just get, you feel bad and the symptoms get worse in the few weeks or days leading up to your next infusion. Now it's a difficult and I think a lot of people Feel mis, you know, perhaps rightly misunderstood and unheard because it's often dismissed as not being a real thing. Now I think when, when kind of when doctors say it's not a real thing, I don't think that's us saying we don't believe that you're having these symptoms because clearly people definitely are and there are lots of people having this, this thing happen. I think what we mean is there isn't really a biological explanation for why this should happen, particularly for the drugs such as Ocypus, because we know that the way how the drugs work, you know, they deplete the immune system and then that the immune system for most people, for majority of people is depleted for a lot longer than the six months between treatments that which we're giving people. So from a biological sense there shouldn't really be a reason why this should happen. Now that is not to say that people don't have those symptoms, but quite why people are having them, we don't know. And I'm very honest with people and I don't think we should stigmatize there being a psychological element to this because that doesn't mean those symptoms aren't real and it doesn't mean that it isn't horrible. But I think it's just acknowledging that it's more likely to be our expectation that we know that this is going to happen in a month. So our brain is starting telling us that we need this and so that's why our symptoms get worse. Now I'm not dismissing anybody's symptoms and I think they are obviously really, really real. But I think we do need to destigmatize the fact that our, our mind is very powerful.
- [40:27]
C
Yeah.
- [40:28]
D
And can create physical symptoms. Not create, but you know, can, you know, lead to physical symptoms. Yeah. And my feeling is that that's probably the best explanation for the crab gap in most of the disease modifying therapies.
- [40:45]
C
Is there anything that neurologists or Ms. Nurses tell people to sort of, if this is something that happens to them that they can do, say for the week leading up to their next infusion to be a bit extra kind to themselves?
- [41:00]
D
I think we should be kind to ourselves and I think, think just acknowledging it and not kind of feeling like we don't like again, it's not absolutely don't want people to think we don't believe them, but I don't think it, you know, it's not, it's not, you know, necessary to bring treatments forward for these reasons necessarily. But again, being kind to yourself Recognizing. Acknowledging it. And that's what I say with any symptoms that I feel more. Have a more kind of a mind over matter kind of basis. Is it acknowledging it, Recognizing that you're not coming to any harm physically from this. And those symptoms are likely to improve with, you know, with or without the treatment, to be honest.
- [41:43]
C
Yeah. Thank you so much for this. I do feel like I've been quitting you on all these things. Like we've been back at. Been back at school.
- [41:52]
D
That's all right. I hope it was okay. Okay.
- [41:54]
C
You did a fantastic job. And I feel like I've learned more about these things. I mean, certainly things like peer angle were new words for me this year.
- [42:03]
D
I mean, if I don't know, I think just to kind of frame that all together with the kind of different types of Ms. Is that I think, and I've probably said this already, but just to say it again is what we're really trying to as a community move away from Ms. Being split into these different types, recognizing that Ms. Is a phasic condition. So when you're in the early stages, generally when people are younger, they're more likely to have inflammation and relapses and new lesions on a scan. They may have some para. So some progression independent of relapse activity, but may not. And then as the disease becomes, you know, moves through the disease, then that's why, then you become. It becomes less inflammatory, but less, but possibly more progressive. And that's where we see the impact of these papillon mouldering lesions and the lack of compensation for the other scarring on the brain. And that's where we see accumulation of problems and disability. And that's, you know, peer and kind of progression. And I know some people are asking, you know, is it a kind of. Are these words? I think we will find them being used interchangeably. But the reason really to bring pyrrha to the foreground is to recognize that, you know, progression can happen at any stage, but it isn't necessarily going to definitely happen, but it can. I think recognizing and being honest about that is important.
- [43:27]
C
Do you as neurologists get these like terminology to actually present it to you to use? Because I think one of the questions that popped up was why do all neurologists say different words and they're talking about the same thing and so why.
- [43:43]
D
Do we say different words or why don't we.
- [43:45]
C
I just wondered whether you ever sort of, when you have conferences and things and they say, well, actually we're going to stop using this word, we're going to use this one instead now?
- [43:53]
D
No, I mean not really. I think there's been a kind of, it's more of a gradual thing is that, you know, here a kind of probably has been in the last two to three years is becoming a more accepted, you know, more recognized term and I think it's very, it's going to be incredibly difficult to move away completely from relapsing, remitting a secondary process progressive predominantly because of the licensing of the disease modifying therapies and trials and the trial populations and the definitions and how trials are done. So I think it's going to be, we're trying but it's going to be very difficult to get away from that completely. But no, I think in answer we don't really have a kind of like you must use this term now and you can't use that term. More of a kind of evolution.
- [44:35]
C
Well, you did a fantastic job explaining everything Kate. I really appreciate it it. And let's hope that there's not too many new terms coming out in, in the next year.
- [44:46]
D
I'm sure there will.
- [44:47]
C
We'll call you up again.
- [44:49]
D
No problem.
- [44:50]
C
Thank you.
- [44:51]
B
Thanks so much for listening to this podcast from the Ms. Trust. As we're a charity, we don't have ads in the break of our podcast but I am going to take this opportunity just to tell you about some of the work that we do here. We fund, train and place Ms. Health program professionals into areas of greatest need in the uk. This does of course include Ms. Nurses. We also produce reliable, fact checked up to date information that helps people make sense of Ms. This podcast is an example of that. But we also have our A to Z pages on our website that people can access any time of day. And we also produce free physical copies of our booklets as well that are there to help people make sense of Ms. With trusted information. We also have a free confidential helpline that anyone impacted by Ms. Can contact. These services are only possible due to the generosity of our donors as we don't receive any government or NHS funding. So if you're able to please do consider leaving us a donation today. The impact will be huge as you'll be supporting these vital services that help people living with Ms. Today in the uk. If you're unable to leave a donation, how about leaving us a review on our podcast? It really does help to drive us up the charts. Thank you so much. And now back to our information on myths, jargon and more. Okay, thank you very much. Welcome back. So we're joined by Steven and Simon, who both work at the Ms. Trust. So before we get going, I was wondering if we could ask you to introduce yourselves for our listeners. So, Simon, could you introduce yourself for us?
- [46:45]
A
Yes. I'm the helpline manager at the Ms. Trust, so me and the small team look after all the calls that, all the questions that come into the Trust, whether it's phone calls, emails, through social media, and try and point people towards the information they need to make their choices and decisions and find their way.
- [47:07]
B
Through life with Ms. We'll pass on to Stephen.
- [47:09]
E
So I'm on the fundraising marketing team or fundraising community team at the Ms. Trust. I have Ms. Myself. I was diagnosed just over five years ago, so I've gone from being a fundraiser myself in various activities for the Trust to now doing that as my professional role, I guess. So anything from, you know, helping other people with their fundraising journeys, support communications and things that going out, advertisements, all that kind of thing. And I get involved with the communications team quite a lot as well.
- [47:41]
B
And so we're talking all things myths today. Stephen, as someone who lives with ms, have you heard of this one before? So, Miss Is fatal always?
- [47:51]
E
Yeah, I've heard that one far too many times, particularly when you're newly diagnosed. It's probably one of the more shattering things to hear and it's one of the things that certainly drew me originally to the Trust as a source of information because there was so much misinformation out there, particularly on, like, social media platforms, to get, like, information I could trust and to not have a panic attack. Just thinking about it was really, really integral, to be honest. Especially when you're trying to navigate your own health, trying to navigate, you know, potential treatments and everything, it's like the last thing you need to think about is, oh, is this going to kill me? It's just, it's not something that you should need to think about and it's also, you know, as we know, completely untrue.
- [48:38]
B
Passing on to you, Simon, as someone who has lots of information about ms, can you tell us, is this fact or fiction?
- [48:45]
A
Ms, except in very rare instances, isn't a fatal condition. It does create for some people complications that might be life threatening, particularly if mobility is badly affected. So though they sort of raise the risk for respiratory infections, pneumonia, swallowing problems, pressure ulcers and so on, which would apply for any condition in which somebody is very immobile. And of course not everybody with Ms. Will be in that situation, but there are a proportion of people with Ms. For whom those Complications might arise and they can be managed to differing degrees depending on the level of care that's available. So yes, Ms. Is a condition that you live with. It won't kill you itself. There are situations where you need to be sort of careful and look after the factors that are affecting you which, which may be caused by ms, but Ms. Itself is not the thing that will take you away.
- [49:55]
B
Next up. So have you heard of this one before, Stephen? So has anyone said to you everyone who lives with Ms. Will use a wheelchair?
- [50:04]
E
Oh yeah, I mean that's, that's, that's one I've heard many times. And you know, I, I do a lot of things with the Ms. Community and I have friends who've got Ms. Anything from in their 20s right up into their 60s and 70s who. And again, as Simon said in the last point, it entirely depends on your circumstances. It's such a broad spectrum of a disease that it's. There's no way of knowing what the future is going to tell how aggressive your Ms. Is going to be. But generally speaking, there is no guarantees that you're going to be in a wheelchair. I know people who have lived long and as healthy lives as they can do up until the day they died, never using a wheelchair. But then, you know, you'll have some people who immediately end up having to use mobility aid and that, that entirely depends on your circumstances and how aggressive your Ms. Is going to be. And also just combination of genetic and look, I guess my Ms. Was personally like very aggressive at first. I developed a lot of brain lesions in a very short period of time but has been relatively stable since I started on treatment. So fingers crossed sort of thing. But yeah, I think again can be used as a bit of a scare mongering and I think you need to be very, very careful about how that kind of thing is worded because it is not going to affect everyone. But obviously it is a risk that is possible, but hopefully something we can continue to reduce the chances of happening as time goes on.
- [51:33]
A
I think there's one of the issues with Ms. And particularly when people are newly diagnosed, is that Ms. Isn't a particularly visible condition. Most of the symptoms are invisible. You wouldn't know that somebody had them unless you spoke to them or saw them moving around or whatever. So a walking aid or a wheelchair is perhaps the most visible representation of Ms. That most people have, even though it's only a small proportion of people who've got the condition. And when we talk to people when they're newly diagnosed, I think that is the impression that they got of what Ms. Is. It's somebody in a wheelchair. But as Stephen says, it's a small proportion of people. The longer you live with it, the higher the chances that you might need it. But it's still not going to be everybody by any means at all. And yes, there are people who live to old age with, with, with no need for a wheelchair or an aid.
- [52:39]
B
Of that sort, this next one. So we're going to come to you with this one. Stephen, obviously you work at the Ms. Trust, so we'll take this.
- [52:48]
E
Yeah, I would like to think I'm a little bit living proof that this one's not true.
- [52:53]
B
So this is people with Ms. Can't work.
- [52:56]
E
Yeah. As I say, I would hope I'm sort of a living example that this one's not true. I know again, so many people within the Ms. Community who still managed to work, maybe they've had to ask for reasonable adjustments and that is your legal right, within your role to ask for that. You know, it's a, it's a protected condition and if there is, you know, reasonable adjustments that you need within your working life, your employer should be willing to accommodate those. It's not your fault, you know, you did not ask for this, this. And there is no reason to believe that within a reasonable set of parameters you can't still contribute and work as before, admittedly with some added changes. You know, personally, I do most of my work from home. I'm very lucky to have an employer that lets me do that. I know not everyone's employer lets them do that, but it's made a massive difference to my quality of life. So, yeah, just make sure that you know what your rights are. Because I know when I was first diagnosed I was treated rather improperly by an employer and I didn't know at the time how to defend myself and how to. How protected my role should have been. So I would make sure that, you know, if you're unsure, do your homework before you speak with your employer and make sure that you know exactly what your rights are and if need to be, get involved with trade union or support or speak to a helpline.
- [54:21]
B
Thank you. And over to you, Simon.
- [54:24]
A
Yes, yes. The protection that Stephen talks about under legislation called the Equality act. And so there is legal protection. A lot of employers are helpful in sort of trying to find ways to accommodate the needs of ms, though employers often are newer to Ms. Than the employee who has the condition and there's a lot of letting people know what it is that you need and how things can be accommodated. But the aim of the Equality act is ultimately is a win win for the employer and the employee. The employee remains at work and can use their skills and experience and the employer has access to those skills and experiences and making changes, some of which can be sort of relatively small, some of them are a bit more substantial, can hang on to that skill that's there. And the important thing is to think of somebody's ability, not any actual or potential disability. And sometimes that's a sort of a shift in thinking that takes a bit of time for both employer and employee. I think a lot of people with Ms. Fall out of work because they expect, as the myth says, they expect that it will be a challenge to work and don't necessarily tap into all of the support that's available, the legal support through the Equality act and then schemes such as Access to Work, which are there to help people overcome whatever impact Ms. Might be having in the workplace. Admittedly some people, there are situations where it's not possible for them to carry on, but that's not step one. There's a lot of things that can be done before you might have to get to consider if that's the right decision for you.
- [56:13]
B
I like what you said there about thinking about someone's ability rather than their disability.
- [56:17]
A
Yeah, yeah, absolutely, yeah.
- [56:20]
B
The next myth we have is so only older people will get Ms. Has anyone ever said that one to you?
- [56:27]
E
Oh, yeah, I've definitely had surprise being like, oh, you're awful young to be getting diagnosed with Ms. And yeah, the immediate clap back to that is, well, all the, all the recent research, you know, certainly of the last 10 years, suggests entirely that the other side, that it's actually mostly in your 20s to 30s that you're most likely to be diagnosed. I think I had some experience with Ms. Before developing it myself. My, my mother's best friend had it and was only diagnosed quite late in life and had been misdiagnosed with various things along the way. And I think that's a very, very common story for a lot of people going back a few decades. I think that's where the, really the big difference is and sort of where the, perhaps a lot of public opinion is potentially misled in that respect. I think Ms. Has come on so far and our understanding of the disease and its action and when it's most likely to happen has just evolved so much over the last decade or so. And I think the general knowledge, getting out into the wider sphere, because it's a You know, not the most prolific of diseases, I think, is one of those things that will slowly change. But currently we're still kind of living with that sort of overflow of knowledge from several decades ago, not quite being updated with people, unless you're directly affected by it. I, I'm certainly surprised by the stats the first time I read them, but, no, I was diagnosed in my mid-20s, now in my nearly mid-30s. And, yeah, it's, it's, it's fairly common, really, for diagnosis. I would say the majority of people I encounter now are being diagnosed in that sort of age range.
- [58:10]
B
Yes. That's really interesting. Thank you, Stephen. And what do you think on this one?
- [58:14]
A
Partially it might be down to, again, to the visibility of the condition. When people are recently diagnosed, as Stephen says, in their 20s and 30s, they're more likely to not have visible symptoms. So when people sort of get into their 40s, 50s and older, and symptoms might be building up a little bit more and becoming a little bit more visible, that's when people notice that somebody might be using a stick or might have various other symptoms that are affecting them. They might have had Ms. For 20, 30 years by that stage. But the visible bit is when somebody's in middle age, even though the majority, or not the majority, the largest proportion of people are diagnosed when they're younger. But it is a condition that can be diagnosed at any age. We've spoken on the Healthline to people who've been diagnosed in their 60s and 70s. We've been spoken to teenagers who have Ms. It's rarer before puberty, but there are cases of young children who've had Ms. As well. So it's. Pinning Ms. To an age is, is, is incorrect.
- [59:26]
B
Next up is about exercise. This is a tricky one because we see this one online quite a lot. And so the myth is exercise is bad for people with Ms. What do you think, Stephen?
- [59:38]
E
I, I would vastly disagree with this. I think the thing I've learned is, so I was very, very heavily into weight training and did a lot of very heavy weight training prior to my diagnosis. And I definitely had to turn that back because I wasn't able to. It wasn't safe for me to do some of the things that I was doing previously, but it didn't mean that I'd lost all ability. You know, again, reasonable adjustments allowed me to still do quite a lot. Of course, when you're going through periods of relapse, it can be difficult, you know, through pain or weakness in certain areas. That can certainly hamper your ability to exercise, but I wouldn't say, say it would raise it entirely and it's certainly not bad for you. My personal experience when my symptoms got much worse after about of illness was physiotherapy. You know, I had a, I had a referral to a physiotherapist and that helped immensely. And you know, we built my strength up over weeks and weeks and weeks with smaller exercises and slowly, once those muscles were starting to regain their strength and I was able to cope with more than going back to the gym and it improved my, it improved my prognosis massively and went from really struggling and using a walking stick for months on end to being able to walk more or less normally again. And that's that. I, I personally felt like that was directly a result of the, the physiotherapy and the exercise that I was doing keeping your muscles strong. I think any doctor would tell you, regardless of multiple sclerosis, if you are not able to move or not physically, you know, moving around and being active, you will decline to some degree that would happen to a healthy person, let alone if you've got a condition that is then making that more difficult. So if you can't, it's, it's all about finding what you can do within, within your remit, within your ability. As long as you're moving, it's good for you. As long as you're not pushing yourself to a point where, you know, you've run out of spoons and you've not got the energy and you're leaving yourself exhausted and run down. As long as it's something that's within your, sort of within your scope, it's a good thing for you to keep moving.
- [61:48]
B
Just, just for anyone who hasn't sort of heard that analogy with the spoon, Stephen, could you explain that?
- [61:54]
E
So spoon theory is widely popularized within pretty much all of the chronic illness world. I would say I kind of describe it as being like imagining your energy as blocks of currency. So you are allocated X amount of spoons per day. These are the spoons that you have to spend. Now I shouldn't have to tell anyone you can't spend more than you have it. Is that so? It's about allocating those, those portions of energy throughout the day. Like, what do I need to get done today? What is it going to cost me to do these things? What, you know, adjustments am I going to need to make in order to make sure that I can get everything done? Do I need to move something around? Do I Need to take breaks? Do I need to do this? Just to make sure that overall you're not going to leave yourself with a deficit which will then leave you ultimately suffering.
- [62:41]
B
Gotcha. Yeah, yeah, absolutely. And Simon, could you tell us about exercise?
- [62:47]
A
Yeah, no, I think I agree with everything that Stephen says and I think one of the things that probably so powered this myth was the fact that Ms. Causes fatigue. And the payback from activity is much higher if you have Ms. Than if you don't have Ms. If you push yourself to the wall with ms, the recovery time may be measured in days rather than in minutes, as it might be for somebody who doesn't have Ms. And then that was sort of extended to. Therefore exercise would be bad for people because fatigue is a problem. But I think it's important to be aware of fatigue and respect fatigue, but not let it be a barrier. And to do what you're able. And when your body starts to tell you that you're running out of spoons, to respect that, to stop, to take a rest or stop for the day and then do something the next day, because fatigue actually. So exercise actually is a way to challenge fatigue. If you keep sort of exercising, as Stephen says, if you're building up your strength, your body's as fit as possible, then you're better able to cope with what Ms. Is throwing at you and to deal with the fatigue. If you just sit on the sofa all day, your muscles will become deconditioned. It takes that much more energy to move them around. Fatigue will be higher. So remaining active is very important. If you can do aerobic exercises and strengthening exercises, lifting, not lifting weights necessarily, but sort of weight bearing exercises, then that's particularly good. Even if it's just sort of moving around rather than sitting down all day and doing what you can, it's going to be having some effect and your body is going to be benefiting from that.
- [64:53]
E
I also personally find yoga has been really hugely helpful for me in terms of flexibility and avoiding like, spasticity and yeah, squats are my biggest friend, I'll be honest. Squats reduce my stiffness and inability to, to move. And like you say, that recovery is so much better when I'm being active. So even when I have a flare of that sort of lacking in energy and I'm having that fatigue flare and I'm maybe struggling for a few days, I find the recovery time is so much, much quicker if I've been active and then giving myself a rest when I need it and then returning to activity once I'M in a position to do so again.
- [65:29]
A
And it's probably better to think of it as activity rather than exercise. Some, some people exercise is, is the motivator and they're happy with that. For a lot of people, the idea of exercise means lycra and gyms and things that feel alien to them, but, but just staying active during the day and, and getting out and about or, or doing things where otherwise you, you, you might just be sat around and not doing things that, that has benefits as well. So if you can find an activity that you enjoy, then you can trick yourself. It's not actually exercise.
- [66:08]
B
That's a good strategy. I like that. Next up. So have you heard of this, Stephen? So within your experiences, have you heard of people who have Ms. In the family, potentially from a, you know, parent, sister? The myth is Mississippi runs in the family. It's hereditary.
- [66:27]
E
It's definitely something I've heard banded about a lot and is something that I think gets talked about particularly online. I think some people say, oh, you know, there's such and such. My, my grandfather had this, that and the other, or suspected or, you know, perhaps even sort of making it fit after the fact without concrete evidence or diagnosis potentially. But again, I think there's a, there's an element of myth of people not understanding that there is a difference between genetic factors and genetic inheritance when it comes to disease. You know, there are diseases which are absolutely genetically inherited. You know, Huntington's sickle cell. These are things that we know and we have genes identified that leads that can be passed from your parents and lead to a disease. And this is caused by a combination of specific genetics which we need to remember with genetics is not just what you inherit, it's also your environment. Environmental genetics can be equally, if not just as important as inherited genetics and can be caused by such a wide variety of things. We know obviously from research that if you have ms, there are certain tiers within your family that make it more likely. So siblings. We've seen that the, the specific combination of genetics that leads, you know, your parents to have you as a child and have other children means that you're more likely to have genetics in common with your siblings. Ergo, the, the, the, you know, the, the genetic combination is more likely to be in common with a sibling. So the, the difference between a parent having Ms. And a child is, is still quite wide, whereas it's significantly higher between siblings. And I think that's again, goes to show that it takes a very, very specific cocktail of genetics to lead to Ms. And there's no one thing that causes it. It's a variety of things. And just because you've got a family member with Ms. Doesn't mean that you're going to get it. You know, I've got a daughter, she's not even two years old. Be lying if I said that. I don't worry about it sometimes but I also know that the facts back up that it's not much more likely for her to develop Ms. Than a normal member of the population. Very slight difference. So try and keep that one in mind.
- [68:50]
A
I think what Stephen said is quite right. There are some conditions where a single gene is passed down through the generation and that can cause hereditary conditions. So far in Ms. There's around, I believe it's about 250 genes that have been identified, each of which carries some small risk of susceptibility to Ms. None of them on their own will cause that. But if you have enough of these genes that make it through the combination of your parents genes into you as a child, then you will be susceptible to Ms. The genes that themselves don't cause ms, but in combination with something environmental or other factors that are still being investigated, then you may develop Ms. Which means that if there is Ms. In the family then somebody else in the family has a slightly higher risk of Ms. Than the general population. But it's still considered quite a low risk risk. And to illustrate it, I mean would be identical twins who are genetically identical obviously. And so you, you would think if one twin got Ms. Then so would the other. But the studies have seemed to find that it's about 1 in 3, 1 in 4 rather than 1 in 1. So there is more, more to it than purely the, the, the genes. So yeah, so I think when people talk about Ms. Running in families it's often people who have several family members with Ms. Will, will point that out. But a lot of people, the majority of people with Ms. Probably don't have a family member with, with Ms. Chance or the mischance of the combination of particular genes and particular environmental factors that, that, that come together.
- [70:51]
B
Finally the last one that we have, people will often say, you know, I must have done something that would cause my Ms. Or a parent might say was it something that I did that has caused my child to have ms? Have you heard of this one before in the community?
- [71:08]
E
Too many times I've had it straight put at me by a family member no less that my poor diet and over consumption of dairy as a child caused my Ms. And the the, the, the absolute indignity in which they said it, they were so convinced that that was the cause. Like, sorry, no, no, there's absolutely nothing to suggest that whatsoever. It's a really specific cocktail of genetic and environmental factors and ultimately more research and more knowledge needs to be developed on the subject in order to further fully understand what is going on and what leads to this. So don't ever think that you're at fault. You're Ms. It's, you know, you're living with Ms. And hopefully you're living as well as you can be with ms, but you are by no means responsible for it and don't ever think that way, please.
- [72:00]
A
I think that's right. I mean, the cause of Ms. Is such a complicated jigsaw and is not properly understood at the moment. And if you were to sort of try and avoid everything that, that everybody suggests it might be something that, that is a risk factor. You, you'd lived your whole life in a bubble and potentially you would still get Ms. If that was the way that things were stacked up or not, if, if they weren't. So, yeah, it's, it's. There is nothing proven there as a single cause of Ms. Or anything that you might have done. So it's natural for people to feel that, because I think we sort of live in a world where ill health or disease is based on something that you've picked up or you've contracted somewhere or however you want to think it. And also it's worth thinking with Ms. That it, its onset is gradual over a long period of time as well. So if you're sort of thinking back to what you might have done six months before diagnosis, the machinations of Ms. Might have been happening for a number of years before that. And things that happen recent to diagnosis will be unrelated to the fact that you have Ms. As well. So it's, it's a natural thing for people to think, but I think it's a bit of a rabbit hole to try and find ways to avoid it. Stephen, you're definitely not going to be wrapping your daughter up in cotton wool to avoid things. And we don't know what might be the right sort of cotton wool, even if cotton wool would work. So, yes, live the life that you have.
- [73:56]
B
That's great. Thank you so much. Thank you for explaining, exploring some of these myths with us. I know there's probably a lot more that the listeners are thinking of as well, but thank you so much. So we'll see you next time. Thank you, Simon and Stephen.
- [74:09]
C
Thanks Nick, I've heard so many of those myths myself. I thought it was, it was really interesting to hear what Simon and Stephen had to say about them. You know, especially when you're newly diagnosed, you'll go out there and there will be people who've heard something about their message and they'll question this, that or the other. So it was nice to hear a bit of a myth busting session. It's also quite depressing to hear that some of these myths are still kicking around. But I also feel like, you know, with the world being the way it is at the moment, it's quite scary to see how sort of lacking fact checking is getting and people are sort of putting views down as facts. Simon, I would like to point out, actually wrote an article that's on our website that's really good, which is called Facts or Fiction and it's giving some good ideas on how you can fact check information online yourself. So we will pop that in the show notes so you can have a little look at it because it's a, it's a, it's a good way to, to help if you're coming across some Ms. Information that you think. Hang on a bit. Is this, is this real?
- [75:14]
B
Yeah, I think definitely, Helena, because we both work on our social media pages, we see so many of these myths like cropping up over and over again. Not just the ones that we talked about, but all kinds, literally all kinds of different things. And I think unless, you know, you're being really, really sort of careful about what you're reading and the sources that you're looking at, it can be quite easy to get drawn in by, by lots of this information as well. And I think that's one thing that we didn't talk about so far is actually when someone's putting across information to you and they, you know, they look like a reputable source or doctor or something along those lines, it can be quite easy to, to take that information on board and think, wow, you know, must be true. It's coming from this person, it's coming from this website, you know, they've got hundreds of people, thousands of people, you know, also following them and talking about it.
- [76:13]
C
That's true. And I think, you know, some people when they are online do sound really authoritative in the way that they speak, you know, like they really know what they're talking about. And even if it's just their views, it's coming across as they've done their research. They know exactly that this is, you know, the truth for everyone. And I think, you know, we've had that on our own Facebook group a few times where we've had to put posts down to sort of say that this is a group of people with their views, you know, so when people are saying things like, you should do this, they're actually saying, this is what I do. And it's a bit of, bit of a difference there. And I think, you know, it's hard to know what is truth and what isn't truth. So I think it's really important to be, to be careful and especially, especially if it has anything to do with medication, you should always, always, always check with a health professional before you do anything, any changes or anything like that. Now, as for Emma's jargon, I loved talking to Kate. I've learned so much myself because, you know, some of these terminology like PRN Raw is quite new. So I thought it was really interesting to hear what Kate was talking about. But what I would like to say here is like, if you're talking to a health professional and you don't understand what they're saying, do ask them again to explain it to you. Because sometimes these things don't make sense and it's not, you know, it might feel embarrassing, but honestly, there are no questions that are stupid when it comes to your health. You really need to understand it. And I think, you know, the health professionals really should do better in trying to explain it to you as well. I mean, maybe not all neurologists can be as wonderful at explaining these things as Kate was. But, but, but, you know, I think it's, it's super important to, to ask the questions.
- [77:56]
B
Yeah, absolutely. And as well, Helen, you can always reach out to the Ms. Trust helpline, which is where Simon works as well, who I've heard from today. So that service is available from Monday to Friday, apart from UK bank holidays and you can get hold of the team from 10am to 4pm Outside of those hours. You can of course leave us a message and we'll get back to you as soon as we can. So if you do have a question about any aspect of life of MS, contact the helpline on 0800-03-23839. If you'd rather ask your question via email, you can get in contact with the team@askrust.org and we will of course link to all of these, these resources.
- [78:44]
C
In the show notes and you can also find us on Facebook, YouTube, X TikTok and Instagram where we will be there fact checking our the information that we put out. You can find this podcast on Spotify, on Apple Podcast and Amazon music and also YouTube music. The video is up on the YouTube. And you know, if you've come across any interesting myths or jargons that you would like us to explain, why don't you drop us a comment and let us know and maybe we can do some more videos on the topic.
- [79:21]
B
That's right, Helena. And we're going to wrap up our first episode of the year. We hope you enjoyed it. If you did, please consider leaving us a review and sharing it with your friends. Bye now. See you next time.
- [79:33]
C
Bye.