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Living Well with Multiple Sclerosis
Webinar highlights - All things Overcoming MS Q&A with Dr Jonny White | S7E15
00:40:12
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- [00:00]
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Whenever we're at a retreat, we're together for the five days. We have an exercise where we do shop with fake shopping exercise if you like. And we take some common foodstuffs that you'd find in your local supermarket or grocery store and we essentially do a traffic light system. Is something green that it can be eaten freely whenever you wish, as much as you like? Is it amber, which is the maybe sometimes, but not every day, or red? Is it an absolute? No. No. So things like chocolate, dairy are red. Things like fruits, vegetables, pasta, rice, etc. Legumes, all in the green. And in the middle you have real life. Because in real life when you go to the supermarket and you pick something up, quite often it will have one ingredient probably far down the list. You think? I don't really know that I want to be eating that.
- [00:42]
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Welcome to Living well with Ms. This show comes to you from Overcoming ms, the world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life. Through the Overcoming Ms. Program, we interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Don't forget to subscribe to Living well with Ms. On your favorite podcast platform so you never miss an episode. And now let's meet our guest.
- [01:16]
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So hello everybody, good morning, good afternoon, good evening wherever you are in the world. Thank you very much for joining us here for the final part of our Refresh with OMS webinar series. My name is Jonathan White or Johnny. I am an obstetrician and gynaecologist working in Northern Ireland, on the beautiful north coast of Northern Ireland. And my role within OMS is that I am an event facilitator and a medical advisor for the charity. I myself was diagnosed with Ms. Almost exactly five years ago. So my first symptoms started at the beginning of June 2015 and the roller coaster for me was a relatively short one but extremely bumpy and I got my diagnosis in October of 2015. I found OMS straight away. I was very, very lucky and I followed it ever since. And I'm a very passionate believer in the program and I hope a successful advocate for it. I would always caveat anything that I do with OMS to say that I'm not a board certified or prescribing neurologist. I don't claim to be, but I do have medical training and I am a practising doctor within the uk. If I will answer your questions as honestly as I can, if I can't answer it, if I Don't know the answer, then I will try and find it for you.
- [02:32]
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I'll start with our first question from K. Who asks, like many women with primary progressive ms, her Ms. Symptoms began not long after menopause. And because estrogen is so important in regulating the immune system, do you think estrogen could be a potential treatment for postmenopausal women with ppms?
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So that is a really good question. It's one that we get asked all the time. The answer, unfortunately, Kay, is that we simply don't know. Part of the reason for that is that the studies that have been done into estrogen replacement, most commonly hrt, hormone replacement therapy, have tended to be very small and they're quite old. So the data isn't particularly good. As you say, it would make sense. So we know that, generally speaking, Ms. Often does get slightly worse in terms of either relapses or disability progression, and after the time that the period stopped, which for most people is around the age of 50 or 51. But we've never been able to show that giving people HRT solves that problem. And in fact, there was a recent study that showed that people after Ms. Or after the menopause with Ms. Generally, they actually didn't have an increase in their relapse rates and their disability didn't tend to progress as much as we thought it would. So that was slightly reassuring. But to your original question, should we be giving estrogen? The guidance and advice at the moment is no, that we do not. So if you require HRT for another reason, for example, you're troubled terribly by night sweats or flushes or irritability of mood, these sorts of things, what we call vasomotor symptoms of menopause. If those things are very troublesome for you, then you should use HRT to treat them, being aware that HRT does come with risks. So there's a very slight increased risk of breast cancer up into five years of use. There's, with certain preparations, a risk of clots in the legs and lungs, these sorts of things. You must be aware of those risks, obviously. So you wouldn't use it just for your ms, but the science would be fairly sound to say that it may help and it may be an added bonus of using HRT for other reasons. But I wouldn't just use it just because you have primary progressive Ms. And you're now post menopausal.
- [04:42]
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Our next question, Johnny, comes to you from person whose first name is not particularly clear. They ask, are any takeaway meals customizable for Oms diets like burritos, for example.
- [04:55]
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So in Northern Ireland, not many, to be honest. We're very fond of deep fried foods here, same as our cousins in the west of Scotland. My go to, to be honest, if I'm doing takeaway, especially at home, is pizza. So pizza is very easy to make Oms friendly. Generally speaking, if you take away the cheese, you can eat more of it, which is a bonus. And as long as you put the delicious toppings that I always think of. So things like olives, red onions and peppers, anchovies, which I'm a massive fan of, those sorts of things, you can make a delicious takeaway. It feels like a treat and you're very likely to be okay. Oms wise. The one sort of thing I would say about that is if you go to somewhere like for example, Domino's or one of the high street ones, I can't stand over what oils they may or may not put into their dough. If you're being honest, they probably do put some added oils to preserve the dough. And in an ideal world, it would be a, you know, a small local pizzeria that's doing your takeaway. That would be the first one I would always think of. There would be certain. So Southeast Asian cuisine lends itself very nicely to oms. That doesn't mean, you know, sort of the deep fried chicken ish balls that you would get in your Chinese takeaway. But for example, you know, steamed fish, fresh noodles, those sorts of things. And if you have those near to you, then there's nearly always an Oms friendly option there. Indian option can be good. Just be mindful that a lot of the times the sauces will have cream in them. So you sort of need to speak to the guys that are there and say, well, is there a tomato based sauce that I can use? Are they pouring in tons of horrible vegetable oil? Or even sometimes if you explain it to them and you phone ahead, they may be made able to make an adaptation for you that makes something delicious and perfectly omas friendly. I know that I have actually, and I know that there are certain takeaways that I used to use that I had a sort of a fairly standard order and they'd be able to do an oms friendly version of it without much hassle. So yes, there are takeaways you can eat, but it's not. Not deep fried Mars bars.
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Our next question was actually pre submitted by K who asks. She asked about the foot, her foot and lower leg of her Ms. Affected side. They are often reddish And a bit swollen. And she's wondering what causes that to happen.
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That's a good question actually. And off the top of my head the answer doesn't jump. I have to say generally speaking, Ms. We know definitely and absolutely causes changes in sensation. So you may feel hot, cold, burning, prickling, those sorts of things, but it doesn't often directly cause skin changes itself. You know, you wouldn't normally see reddening or swelling, but likewise one sided or unilateral as we call it. Leg swelling isn't that common if it. There are some causes but they tend to be very acute like a clot. So something that comes and goes is not going to be a clot in the leg. It may be that there's been sort of some indirect damage from the Ms. Rather than the Ms. Directly causing something, but something that the Ms. Has damaged then downstream cause it. So for example, is there, is there a bit of nerve damage to an area that's supplying the little muscles that control the valves that hold blood within the veins and stop blood from pulling?
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So next question is from Steve and this is quite an important question because there's some guidance about life expectancy for people with Ms. And in looking at the OMS website, for example, it's advised that it may be reduced by six to 10 years. And this was based on data through 2008. So his question is why is life expectancy shortened, especially if one follows the OMS program pretty rigidly.
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So I would argue that if one follows the OMAS program rigidly, it's not shortened. In fact, it's probably increased because not only is it protecting you against the effects of ms, but it's also protecting you from the vast majority of diseases that kill people in the western world, that is heart disease, strokes, certain cancers, diabetes, these sorts of things. So Steve, I would say actually that that data, and I know the study you're talking about, I think the data that they were correlating there, it was quite old and when they put together, and it was really from the pre treatment area before we knew a great deal about Ms. And also before we had the effective treatments. I would say, and I know that I've heard neurologists say that they don't really view Ms. Now as having a significant impact on our life expectancy. And to put it into perspective, average life expectancy reduction with a condition like diabetes, which is incredibly common as we know is about 10 years versus MS, which in its worst case scenario was about six. And we thought that the reason that Ms. Reduced your Life expectancy wasn't really the Ms. Itself, but things like immobility and other conditions that you would be more likely to develop as a result of having Ms. So it's not it itself that was causing the problem, but sort of effects secondary to the disease. But I absolutely agree. I think that that number is outdated and I certainly don't believe that if you're following the OMS program that you've a reduced life expectancy. I think it would be markedly increased in my view.
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Question from Elizabeth, who asks if all of her blood tests are normal and she's never had any problems with high blood pressure or cholesterol, how does she know if she has a sensitivity to dairy or gluten? Well, I mean, I presume you would advise her not to consume dairy anyway, but perhaps the gluten part of that question is quite keen.
- [10:10]
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Yes, so. Absolutely right, Alex. It's good you've done your homework on this. Obviously, in the OMS program we don't advise the consumption of dairy. There are ways to test for a formal allergy to dairy, but avoiding dairy and Ms. Is not the same thing as being allergic to it. You're not really allergic to it, it's just that you're extremely sensitive or your immune system is extremely sens to what dairy contains. Namely two big bad things. One, a very high level of saturated fat, which we know is very pro inflammatory and pro degeneration. But also there's protein within dairy called butyrolin, which to our immune system when you have Ms. Looks like myelin, which is the fatty sheath that we are attacking ourselves. And the analogy I use to that one is like petrol in a bonfire. So miss your bonfire. And every time you're consuming dairy it's like you're pouring petrol onto it because to your immune system it increases that response. There is a test for intolerance of dairy, but as you said, it's possibly not relevant because you're probably not going to be consuming anyway if you follow the OMS program with regards to gluten, it's a controversial one. To be clear, there's no direct evidence at present that gluten plays a role in Ms. There's been many theories over the years that it is a pro inflammatory compound and that we should avoid it in autoimmune conditions. But actually there's, there's evidence now that says that people who consume gluten with Ms. Tend to have less disability. And remember that by eating gluten free products you're stripping a lot of the goodness out of the grain to make gluten free. It's very highly processed foodstuff, so we don't routinely advise avoiding gluten. If you do have symptoms, for example, bloating or abdominal discomfort, diarrhea, flatulence, those sorts of things, after eating gluten containing foods, then, and this is the answer to your question, I hope there is a blood test that you can do to show if you have gluten sensitivity. I don't know where the particular person is, but it is fairly widely available. You can often get it privately, you can in fact get it through the mail in the uk, through certain providers, and it's not particularly expensive. The definitive way to diagnose celiac disease, which is the proper condition of insensitivity to gluten, is from a biopsy of the intestine. But you don't need to go that far. There are blood tests which are totally sufficient.
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So the question from Ingrid is she had paroxysmal symptoms when she had a relapse back in 2012 and she thinks she's having them again. She read somewhere that they tend to go away after a few weeks or maybe some months, but she's also read that they don't necessarily mean that you're having a new relapse. So can you demystify paroxysmal symptoms?
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So paroxysmal means that they come and go. The paroxysmal symptoms in Ms. Are relatively common and it really means that old previous symptoms can come and go. And we know things. Sometimes it happens for no apparent reason, but often things like stress or infection being particularly overtired or worn down really just exposes that old damage within the nervous system. So essentially that wiring has been damaged by the previous lesions and by that episode. At times, when the nervous system, if you like, has to work a little bit harder, then the connections just aren't quite as good as the sort of analogy that I would use on their own. Do not mean that you're having a relapse. It's a little bit vague and I know, Ingrid, where you're coming from on this, because when you read it says relapse is defined as new or worsening symptoms, worsening old symptoms lasting 24 hours or more and not occurring within 30 days from the last new episode. So for me, I do have. I still have some symptoms, you know, from day to day. I'm not completely asymptomatic of my Ms. Yet. I hope that I will be at some stage. Does that mean if I haven't had it for a couple of days and then it gets a little bit worse a few days down the line. Does that mean it's new relapse? Well, I think the answer to that is no. As you said at the start of your question, yes, you're very likely to find that they will go away with time. I certainly find that my symptoms, my old symptoms are much worse if I'm particularly stressed about work or home things. And I always find that sort of a few days of really kicking up my meditation, looking after myself, my sleep hygiene, getting to bed early and making sure I'm not taking, taking my phone into the bedroom, those sorts of things and really focusing on my exercise and things that I know build me up and make me feel better will nearly always touch with so far, cause those symptoms to settle themselves down of their own accord within usually a few days or a couple of weeks.
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Our next question is from Lucy, who read recently that it's permissible to have sunflower oil or rapeseed oil in small amounts if they're in prepackaged foods. But as far as she was aware, this was never the case. So she's wondering if this, this has. If this advice has been newly introduced or she'd like to understand a little bit more about that.
- [14:48]
A
Whenever we are at a retreat, we're together for the five days. We have an exercise where we do shop with fake shopping exercise if you like. And we take some common foodstuffs that you'd find in your local supermarket or grocery store and we essentially do a traffic light system. Is something green that it can be eaten freely, whenever you wish, as much as you like. Is it amber, which is the Maybe sometimes, but not every day, or red? Is it an absolute. No, no. So things like chocolate, dairy are red. Things like fruits, vegetables, past rice, etc. Legumes, all in the green. And in the middle you have real life. Because in real life when you go to the supermarket and you pick something up quite often it will have one ingredient probably far down the list. You think? I don't really know that I want to be eating that so much. And the way that I certainly personally do this and I have spoken with other oms facilitators and we all really agree on this one, is that as long as it's a named oil and some named oils are better than others. So for example, rapeseed oil, which is very, very common in the United Kingdom and Ireland and Europe as an additional oil, is actually pretty good. Obviously, ideally you would like it to be cold pressed and not treated in any way. But rapeseed as an oil is very high in omega 3 and it's very low in saturated fat. So personally speaking, if I buy a store bought hummus, for example, that often has rapeseed oil in it, as long as there's nothing else there that is something that I would eat sometime. Sunflower oil is a little bit higher in omega 6 and probably more pro inflammatory and one that I try to avoid if I can, but again in small amounts. And remember that when you see the ingredients list on the back of a packet, it's listed in order of volume of proportion. So the things at the top are in the highest proportion and at the bottom are in the lowest. So if the oil is way down here, that doesn't bother me quite so much. If it's an unnamed oil, for example vegetable oil, you have no idea what that is and you have no idea how it's prepared, how it's stored, what constitutes it. Very often it's palm oil, which is a complete no no for us because it's extremely high in saturated fats. That is a no no. But it's not really a change of OMAS guidance. I suppose it's just a reflection of the unfortunate, imperfect world that we live in. It would be very difficult to completely avoid all oils.
- [16:51]
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Our next question comes from Ben who asks what are the latest advancements and developments in Ms. Research and what's on the horizon?
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I suppose the two big things for me, and one is the research into progressive Ms. There was an initiative launched in the UK about not leaving people with secondary progressive Ms. Behind, which I think has quite rightly but unfairly been the case. At that stage, neurologists said, well, we have nothing else to offer you and I think that's completely wrong and that did need to change. So there's a lot of research going into treatments for progressive Ms. And I think that is to be wholly welcomed. As many people watching will know, there is already one licensed treatment within the European area, ocrelizumab. In the United States, the FDA have approved saponimod as a treatment for secondary progressive Ms. More research into the understanding of progressive Ms. So for example, primary progressive ms, rather than so much inflammation at the start, it's degeneration right from the start, whereas in rare relapsing, remitting, it tends to be the other way around. So that would be number one progressive Ms. Treatment. The second thing would be the holy grail of Ms. Research, which is myelin repair. If you can repair Myelin, rebuild the myelin that's been damaged, you can potentially reverse symptoms and reverse disability. Hand on heart. There's no treatment that's going to be available to the mass market within the next couple of years. There are some very promising ones, most of which are repurposed ones. That is exciting. If you can reverse damage, then you can reverse symptoms and reverse disability. So those would be two big areas. But the third one is one that I'd touched on at the start and that would be the most exciting one for me, which is this growing consensus that lifestyle medicine, which is its own specialty now in its own right, and the benefits of a healthy lifestyle in a myriad of conditions, even recurrent pregnancy loss, which is my own area of interest, is just that evidence base is just expanding so rapidly all the time. And that's really heartening to see if only more doctors could pick up the relevant papers and study them rather than saying there is no evidence for those things. That would be probably the most exciting of all.
- [18:48]
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Paula, wanted to know, if you are, if you have relapsing, remitting ms, are you more likely to move to ppms, primary progressive Ms.
- [18:58]
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When menopause you would move to secondary progressive. From relapsing, remitting, not to primary progressive. The traditional model would be, generally speaking, yes, that did tend to happen, that you saw less relapses and a gradual increase in disability. To be honest, Paula, the term secondary progressive Ms. Is becoming less popular with neurologists. They don't want to label patients with that because when, when that happens, as the rules stand, they stop giving people treatment and they're loathed to do that because there's some evidence continuing the disease modifying drugs into the secondary progressive course, it may still make a difference. So they don't really want to label people with something that means no treatment. And that of course may change in time, but at the minute they don't want to label them as that. As I mentioned earlier, there is actually a blog on our website that I wrote about a study published that really showed that people didn't have that sort of rapid change to the progressive forms just because of menopause. And in fact actually relapse rates, whilst they did go down, disability didn't necessarily go up. And I think if you're, if you're following the OMS lifestyle, then I think that just by virtue of going through the menopause, you're not overnight going to just suddenly develop progressive Ms. No.
- [20:07]
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Our next question from Helen is what do you think the most Encouraging developments are for the management of primary progressive ms, particularly for those with quite advanced disease. Do you agree that it's useful to think about this as, quote, smoldering ms?
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I think the term smoldering Ms. Is the. Is one that doesn't. It's not always used just for primary progressive. I think they sort of say that's the. When there may not be any apparent disease activity, but there's still this damage just constantly going on in the background. This tip of the iceberg phenomenon that people talk about. I think, Helen, to be honest, with advanced primary progressive ms, certainly as the playing field is at the moment, the other side of the question is, rather than a specific treatment for progressive ms, is how would the myelin repair therapies work? If we could find a really effective myelin repair therapy that could undo the damage of primary progressive ms, then that would probably be. Well, it would be even better than a treatment specifically for it. And that is hopefully where this is going to go. I can't tell you the timeframe at the moment, but I know that it's probably not within the next three to five years.
- [21:17]
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Can you clear up the question of whether coconut syrup is OMS friendly?
- [21:22]
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We know that the actual flesh of a coconut where the oil is contained is absolutely not OMS friendly. It's extremely high in saturated fats, the syrup and the water, if you were too inclined to drink it. Coconut syrup and coconut water do not have the fat or the oil within it. They're either the sugar or just the minerals that are naturally within the coconut fruit itself. So we're not coconut syrup, as far as I can see. There's no particular reason why I wouldn't consume it.
- [21:50]
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Adam is on ocrevus and he's diagnosed as having relapsing remitting ms, but his symptoms are more likely progressive. He has limited walking, permanent, Ms. hug, struggles with his bowels, often constipated, distended belly. He follows the OMS diet and takes laxatives prescribed when needed. Do you have any further suggestions for how to improve quality of life for someone with symptoms such as these?
- [22:20]
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If your diagnosis is of relapsing remitting ms, there will be a reason for that. A combination of your clinical presentation and your MRI data. I would hope. If you're concerned that there's the wrong diagnosis, then you should speak to your neurologist because it is important that you have the correct diagnosis. Ocrevus or ocrelizumab is a treatment for both. Relapsing, remitting Ms. And for primary progressive ms, as you may know in the early stages. So on that front, I suppose in a way that is covering you, if you follow my meaning, with regards to things specifically constipation, the two things I'd be thinking about there are, are you getting enough dietary fiber? That's really, really important aspect to this and the most important thing we know for anybody with bowel dysfunction is actually fluid management and fluid intake. If you do not consume enough fluid in a day passing through the bowel and you simply will not be able to produce normal motions and it will make you extremely constipated. So those would be the two things that would strike me straight away with that one, with the Ms. Hug specifically, that's a sort of form of what we call neuropathic pain or damage to pain signaling nerves. There are treatments for that, not specifically for the Ms. Hug, but for neuropathic pain. They generally are antidepressants, not for depression but but for another mechanism of action that they have within the brain or anti epilepsy anticonvulsant drugs. They work well for some people, but not universally well and they do often come with side effects such as drowsiness and cognitive fogginess and things it's worth discussing with your primary care physician or with your GP or neurologist if it's something you wish to consider. Obviously I'd love to speak to you sort of personally about this one. Find out what else you're doing. Is it the whole lifestyle that you're really embracing now or is it just the diet at this stage? How long have you been following it? Because one thing I would say is that many people find that symptoms like that old, their old symptoms do get better with time the longer that you spend on the program. And we know that on average from our own data, from Professor Jelinek's data in the holism study, the STOP Ms. Studies at the NEU in Melbourne, the average time to get the full benefit, if you like, of the program is on average between three to five years. Most people find that they get improvement the whole way through that, but it's really at the 3 to 5 and sometimes even longer than that mark that you get complete or marked resolution or improvement in your symptoms.
- [24:44]
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Jonny, Our next question from Maria concerns the role of propionic acid in Ms. Production.
- [24:51]
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There is a blog on the website which has obviously got much more detail than I'll be able to remember off the top of my head. But the research into propionic acid, which is what's called a short fatty acid. And it's essentially made in our guts by the gut bugs, bacteria or microbiome, which is the word everyone is babbling about now as they break down and they ferment foods in our diet, they make this short chain fatty acid called propionic acid or propionate. We know now is that in studies from Germany, the Germans are really leading the research on this, people with Ms. Have lower levels of propionic acid or PA in their gut, regardless of the type of Ms. That they have or how long they've had Ms. And that doesn't prove cause and effect. All that shows is association. So that was the initial proof of concept that they did. But they've now done a small pilot study because what they did was they essentially took those people from the pilot study and then they kept them on propionic acid for two to three years afterwards and followed up MRI data, relapse data and things like disability progression. And what they found was marked reduction in relapse rate, slowing of disability progression in the people taking propionic acid, and evidence actually on MRI of increase in certain areas of the brain. The opposite trend from what we normally see in ms, which is atrophy or shrinkage of the brain over time. So it's extremely encouraging stuff. Where do you get it? So fermented foods are a fantastic source of all of those short chain fatty acids. So, for example, kimchi, kombucha, sourdough, these sorts of things. All our fermented foodstuffs that we love on oms, but unfortunately they're not a particularly fantastic source of that particular acid. The best source of propionic acid is fermented dairy, but we're not going to be going there. You can buy propionic acid capsules, not easily in some places, for example the uk, but in Germany, I know that you can. I don't think as a charity we're recommending that at this stage, but it's in the spirit of doing whatever it takes if it's something you wish to try. There were certainly absolutely no side effects other than then occasional abdominal distension and flatulence in the group that took it. And they took it for a long time, several years. So it's very unlikely to do any harm. It potentially could have some benefit.
- [27:01]
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Our following question is from Stana, who wanted to know if you had any advice regarding stem cell treatment for people.
- [27:08]
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Who were diagnosed recently with Ms. Hematopoietic stem cell treatment. HSCT is often bandied around as a cure for Ms. And to be clear, it's not maybe in the future, but we simply cannot say that now. What we can that in people who tend the people it works best for are people diagnosed early who have generally inflammatory rather than degenerative activity. So tends to, it appears to work better in relapsing, remitting or early progressive Ms. And it can halt the disease progression certainly in the medium term. So yes, in the right setting it can be an extremely effective treatment, but it comes with risk. So for example, in many places it's not available through your healthcare system. That means going to your foreign country, that runs into difficulties itself. So you'll be away from home for a long period of time. You're in isolation. A stem cell transplant means completely destroying your immune system the same way they do for leukemia treatments, exactly the same, which means that you have no defense against infection. So even the common cold can potentially cause significant harm and potentially be fatal to people. And the quoted mortality rate from the stem cell transplants generally is about 1 to 2%. It's slightly lower, 0.5% in certain places, but generally it's in 100. Generally speaking, it takes at least six months if not a year to fully recover. Not specifically from an Ms. Point of view, but merely by virtue of having this treatment. It is so aggressive and you then potentially run into the difficulties of when you come home. I worry that people think that they are a cure at all stages of Ms. And certainly I don't believe that there is reliable data to say if you've had Ms. For very many years or accrued a large amount of disability, that it will reverse all your symptoms and, and make you completely well again. In that sense, there are also untested methods. So not the full, what we call the hematopoietic stem cell transplant, the full stem cell transplant, if you like. But there are other things called mesenchymal stem cell transplants or even fetal cell transplants which have been practiced before, some of which have no evidence whatsoever for. So you need to be very, very careful before you embark on such a, a hazardous road potentially, you know, in those three to six months after a stem cell transplant, you would be extremely, extremely vulnerable and susceptible to that. And you would need to be extremely careful and probably be spending a very long time in isolation in hospital.
- [29:33]
C
More questions, Jonny? Our next question comes from Claudia, who asks, is there any medication that can help with fatigue if OMS alone doesn't help enough?
- [29:41]
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So things like amantadine are available for fatigue, whether or not not they work is very, very difficult to. To say hand on heart. I don't believe that the data says that they completely restore that. Lots of people talk about other supplements that are curative for fatigue. And again, it's a very, it's a very personal thing because fatigue for one, fatigue for one person can be completely different from another. So, for example, that sense of water wading through treacle that your, your muscles simply won't work, that sort of muscle fatigue that many people get, probably one of the best treatments for that is a graduated exercise program and Vernoniques, the exercise expert there. But certainly there is evidence to say that exercise in fatigue, which seems counterintuitive, is an extremely effective treatment and probably one of the most effective. If, like me, it's not so much physical fatigue, but cognitive fatigue, that feeling of a mixture of jet lag and flu and a hangover, then exercise, yes, is good at clearing your head. But there's no, there's, there's not one size fits all treatment for fatigue is what I'm trying to say. There are pharmacotherapies that are available, for example, the Mentadine that I mentioned before. There are other ones depending on where you are, and it probably will come down to your neurologist and their experience with which works, generally speaking. But often it requires a bit of trial and error, a bit of time to see that things are working and that you know, they don't. Fatigue by its nature, waxes and wanes and you may not know what's making a difference immediately. So it's an extremely frustrating and often the most debilitating symptom of Ms. And there often is no easy answer other than I know from my personal experience that my cognitive fatigue, which can be tricky, definitely is much less prevalent than it was five years ago. It was completely debilitating for me five years ago. I do get it from time to time, and it's very, very frustrating. But generally speaking, it's only getting better with my time on OMS rather than worse. And I certainly think that that's not a coincidence.
- [31:35]
C
Next question is from Sylvie, who has secondary progressive Ms. And has had it for 25 years. After a recent MRI, she was told by her neurologist that her Ms. Is no longer active. So could you explain why her mobility is slowly, still slowly getting worse. She can only walk short distances with two walking sticks, and she has to use a scooter for longer distances.
- [31:56]
A
There is this trend now within progressive Ms. To talk about active and inactive progressive Ms. I, to be honest, I've Been a little bit unclear on this at times because as you say, you can be told that your MRI shows no significant changes. There's no new inflammatory lesions, which you would expect with progressive ms, but there's no areas, what we call the black holds of area of loss of brain tissue either. But that doesn't always tell you the full picture. Obviously, we know that we're more than the mri. It may be that there is this element of, as we've alluded to earlier, the smoldering ms, this Ms. That is going on in the background. But it may be as simple as something like deconditioning and that, you know, the combination of age and lessening of physical activity over time has, has. Is it contributing to that gradual worsening of things? And it may be simply that it requires a few sessions or a bit of instruction from a qualified trainer. Some advice, lots of which is available online and much of it is free. For example, the Ms. Gym is a very good source of that. The OMS website has much as a huge resource base with regards to exercises for all abilities. And that is very often the key to it, that this sort of glib phrase that people use about use it or lose it it, which seems trite but actually is accurate. And it is true that function will, in anybody will deteriorate over time, not just people with ms, if they. If they aren't physically active. I can't answer your question specifically because it is difficult. It is difficult thing because the MRI is not perfect. There are other tests that are being investigated and certainly seem to be coming into clinical practice. For example, neurofilament testing, which essentially is a blood test that looks at damaged areas of nerves, producing little cell fragments that get into our bloodstream. And measuring that is a much more specific way of telling us about our disease activity. But the reassuring thing in yourself, Sylvia, would be that you're told it is not active, as in there's no gross areas of new damage occurring. And that is reassuring. And I would try to use that as a springboard to increase my physical activity, if that's possible. And I know that that is not easy in the early stages, certainly.
- [34:07]
C
How do you know if you're slipping into secondary progressive ms?
- [34:11]
A
So it tends to be a very insidious and gradual thing. They always show graphs helpfully which show relapses as being stepwise. And then as you go into secondary progressive ms, you sort of have the stepwise relapses with less recovery of the function again. And then things sort of slide upwards. So it takes months or years to get a sense of it and it requires the person with Ms. To be quite diligent and vigilant in being aware of their function and their new symptoms and things. And even with that, one neurologist will say, yes, that's going to progressive ms, another will say, no, that's still relapsing, remitting Ms. Just to confuse things even further, there's this new term called progression independent of relapse activity, or pira, which means that you can have progression but not have relapses, but you still have relapsing, remitting Ms. So it's just a symptom of the fact that we don't fully understand this extremely complicated disease more than anything else.
- [35:06]
C
The final question for the evening from our Q and A is from Nicola, who asks, what's the current view about the extent to which someone's children might develop ms? And I'll add a coda to that and ask, how can that be prevented or avoided?
- [35:23]
A
I think that's a really important question to finish on and it's something I would ideally talk. Talk about for an hour on its own, to be honest, Nicola. So we know that if you or I. So me having Ms. Probably increases the risk to my son by about five times. They often talk in the uk, with our current incidence of being about a chance of about 2 in 100 of developing MS, if I have it as a parent, odds of your siblings within your generation of developing are slightly higher. So say one in five, or, sorry, five times higher for your children, probably seven times higher risk that of the general population for your siblings, your brothers and sisters. We know that 75% of one's risk of developing Ms. Is in their 25% is through their genes and 75% of it is through their lifestyle. So there's much of it that you can alter even if you have the genes for Ms. And there's no one Ms. Gene, there's about 200 genes that are potentially involved in MS, so there isn't an Ms. Gene that you pass on to your sons or daughter. The really important thing here to remember is, is that your genes are not your fate. There's a phenomenon called epigenetics, the sense of how our lifestyle impacts on our genes. And the short answer to that is it's absolutely massive and incredible. The most important things you could be doing to stop your children developing ms, number one, don't allow them to ever smoke, massively increases their risk of developing Ms. And if they do get ms, then the risk of progression increases markedly on a dose dependent relationship. So the more they smoke, the quicker their progress. So please don't allow them to smoke. Their vitamin D level is crucially important. The evidence behind vitamin D and preventing Ms. Is I think, irrefutable. Now there's still a bit of debate about if it's of any benefit when you do have ms, but in terms of preventing it, it's irrefutable. And the OMS guidance on that is the dose for children should be 1000 units per 10 kg of weight. So my 3 year old weighs 20 kilos, just about. So I give him a 3000 unit spray on alternate days because that's a convenient method we have for him and he likes the taste. So if I give that an alternate day, so three to four times a week, he's getting between nine and 12,000 units a week. That's perfectly safe. And you continue that until they're around 50 kilos, at which point they just get the 5,000 units a day, which is the standard prevention dose that we advocate on the program. Exercise is not hugely good at preventing Ms. It's very good when you have it, but you would need to be exercising in a very high level regularly for that to be your sole way of preventing Ms. Nonetheless, physical activity is incredibly important in preventing many other diseases, diseases. So it's to be encouraged. Diet really, really important. The evidence in terms of the OMAS diet preventing ms, that study has not been done. It would be very, very difficult to do. But we do know that Ms. Is much more likely in children that were obese at a young age or eating a very poor quality diet. So we talk about general trends and diet quality here. So it's things like, do they rely very heavily on processed and red meats, their consumption of whole foods, are they relying on processed oils, are they taking in fruit and veget vegetables, those sorts of things. And we know very clearly the people and the children with a higher quality diet, going through their formative years and sort of around the early teens up until their adulthood have a reduction in their risk of Ms. So that's massively important as well. So not smoking vitamin D, exercise plays a small part, perhaps. Diet is very important and stress reduction is really crucial. And that idea of you as the parent teaching the importance of managing stress and the benefits of stress, management of meditation or mindfulness, whatever it is that you particularly find to be your thing and trying to bring that into practice as a family is a really, really important thing that I'm certainly trying to do, although it's not working quite so well with my 3 year old just at the moment. Those are the important things, but your genes are not your fate. That's the most important thing to say.
- [39:14]
B
Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode, and please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mab Dean. Our host is. My name is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share? Email us@podcastvercomingms.org we'd love to hear from you. The Living Room with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.