S7E15 Webinar highlights – All things Overcoming MS Q&A with Dr Jonny White

Dr. Jonathan White  00:00

Whenever we are at a retreat, we’re together for the five days. We have an exercise where we do a shop with fake shopping exercise, if you like, and we take some common food stuff so 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.

 

Overcoming MS  00:42

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.

 

Dr. Jonathan White  01:15

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 gynecologist working in Northern Ireland, on the beautiful north coast of Northern Ireland. 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’m a practicing 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.

 

Alex Twersky  02:31

I’ll start with our first question from Kay, 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?

 

Dr. Jonathan White  02:51

So that’s 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 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 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, recently 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 rate 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 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, the 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 risk. So there’s a very slight increased risk of breast cancer up into five years of use. There’s with certain preparations, or 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 now post menopausal.

 

Alex Twersky  04:41

Our next question Johnny comes to you from a person whose first name is not particularly clear. They ask, are any takeaway meals customizable for OMS diets, like burritos, for example?

 

Dr. Jonathan White  04:54

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, some 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 options are can be good, just being 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 OMS 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 very standard order, and they able to do it an OMS for any version of it without much hassle. So yes, there are takeaways you can eat, but it’s not not deep fried Mars bars.

 

Alex Twersky  06:45

The next question was actually pre submitted by Kay, 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?

 

Dr. Jonathan White  07:02

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 cause, directly, cause skin changes itself. You know, you wouldn’t normally see, you know, reddening or swelling so but likewise, one sided, or unilateral, as we call it, leg swelling isn’t that common, if 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 a bit of nerve damage to an area that’s supplying little muscles that control the the valves that hold blood within the veins and stop blood from pooling.

 

Alex Twersky  07:55

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 you know, in looking at the OMS website, for example, it’s advised that it may be reduced by six to 10 years. And this was, 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?

 

Dr. Jonathan White  08:26

So I would argue that if one follows the OMS 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 and 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 itself that was causing problem, but sort of affects 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 reduced life expectancy. I think it would be markedly increased.

 

Alex Twersky  09:50

A 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.

 

Dr. Jonathan White  10:09

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 your immune system is extremely sensitive 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, 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 used to that one is like petrol in a bonfire. So MS, 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, not immune conditions. But actually 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 food stuff. 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 has answered 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 in fact, get it through the mail in the UK, through certain private 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, you don’t need to go that far. There are, there are blood tests which are totally sufficient.

 

Alex Twersky  12:21

So the question from Ingrid is she had paroxysmal symptoms when she had a relapse back in 2012 and she 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?

 

Dr. Jonathan White  12:44

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 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 this 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 out for myself, my sleep hygiene, getting to bed early and making sure I’m not taking my phone into the bedroom sorts of things, and really focusing on my exercise and things that I know build me up and make me feel better. Well, nearly always touch wood so far, cause those symptoms to settle themselves down of their own accord within, usually a few days or a couple of weeks.

 

Alex Twersky  14:28

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 pre packaged foods. But as far as she was aware, this was never the case. So she’s wondering if this has, if this advice has been newly introduced, or she’d like to understand a little bit more about that.

 

Dr. Jonathan White  14:47

Whenever we are at a retreat, we’re together for the five days, we have an exercise where we do a shop, a fake shopping exercise, if you like, and we take some common food stuff so you’d find in your local supermarket or grocery store. And we essentially do a traffic light system. Is something. In 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 so much. And the way that I certainly personally do this, and I have spoken with other OMS facilitators, and we, 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 three and it’s very low in saturated fat. So personally speaking, if I’m buying 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 six 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, we 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 OMS 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.

 

Alex Twersky  16:42

Our next question comes from Ben, who asks, what are the latest advancements and developments in MS research, and what’s on the horizon?

 

Dr. Jonathan White  16:58

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 is 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 license treatment within the European area, Ocrelizumab. In the United States, the FDA have approved Siponimod 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 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 with 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 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.

 

Alex Twersky  18:47

 Paula wanted to know if you are, if you have relapsing remitting evidence, are you more likely to move to PPMS, primary progressive MS, when menopause hits?

 

Dr. Jonathan White  18:52

You would move to secondary progressive, from relapsing remitting, not, 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, that happens, as the rules stand, they stop giving people treatment, and they’re loath 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 that 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, that I think that just by virtue. Going through the menopause, you’re not overnight, going to just suddenly develop progressive. MS, no.

 

Alex Twersky  20:05

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.

 

Dr. Jonathan White  20:22

I think this 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, on 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.

 

Alex Twersky  21:16

 Can you clear up the question of whether coconut syrup is OMS friendly?

 

Dr. Jonathan White  21:22

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 fat. The syrup and the water, if you were so inclined to drink it, coconut syrup and coconut water do not have the fat or the oil within it, there 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, and there’s no particular reason why I wouldn’t consume it.

 

Alex Twersky  21:50

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 and takes laxatives prescribed when needed. Do you have any further suggestions for how to improve quality of life with for someone with symptoms such as these?

 

Dr. Jonathan White  22:20

If your diagnosis is overlapsing 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 it is the wrong diagnosis, then you should speak to your neurologist, because it is important that you have the correct diagnosis. Ocrevus, or ocrylizumab 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 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 you simply will not be able to produce normal motions, and it will make it 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, your neurologist, if it’s something you wish to consider, obviously, I’d love to speak to you, sort of personally about this one, to 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 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 three to five and sometimes even longer than that mark, that you get complete or marked resolution or improvement in your symptoms.

 

Alex Twersky  24:44

Johnny, our next question from Maria concerns the role of propionic acid in MS progression.

 

Dr. Jonathan White  24:50

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 chain fatty acid. Acid, and it’s essentially made in our guts by the gut bugs, bacteria, or microbiome, which is the word everyone is batting 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 guts, 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 a 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 food stuffs that we love in 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 as a charity, we’re recommending that at this stage, but it’s 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 occasional abdominal distension and flatulence. In the group that took it, and they took it for a long time, over several years, so it’s very unlikely to do any harm, and potentially could have some benefit.

 

Alex Twersky  27:00

Our following question is from Stana, who wanted to know if you had any advice regarding stem cell treatment for people who were diagnosed recently with MS,

 

Dr. Jonathan White  27:10

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 say is 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, it 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 treatment, it’s 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 one to 2% it’s slightly lower point 5% in certain places, but generally it’s around one 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 and 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 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 fecal 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 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.

 

Alex Twersky  29:31

More questions, Johnny. Our next question comes from Claudia, who asks, is there any medication that can help with fatigue, if OMS alone doesn’t help?

 

Dr. Jonathan White  29:40

So things like amantadine are available for fatigue, whether or not they work is very, very difficult 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 point. Fatigue for one person can be completely different from another. So for example, that sense of 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 Veronique is the 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 one size fits all treatment for fatigue, is what I’m trying to say. There are pharmacotherapies that are available, for example, the mentazine 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, 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 complete 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 it’s getting it’s only getting better with my time on OMS, rather than worse. And I certainly think that that’s not a coincidence.

 

Alex Twersky  31:34

Next question is from Sylvi, 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.

 

Dr. Jonathan White  31:56

There is this trend now easily 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 holes 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 very good source of that. The OMS website, as 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 lib phrase that people use about use it or lose it, which seems trite, but actually is, 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 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 to get into our bloodstream, and measuring that is much more specific way of telling us about our disease activity. But the reassuring thing in yourself Sylvie 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.

 

Alex Twersky  34:07

How do you know if you’re slipping into secondary progressive MS?

 

Dr. Jonathan White  34:11

It tends to be a very insidious and gradual thing. They always show graphs, helpfully, which show relapses as being step wise. And then as you go into secondary progressive MS, you sort of have the stepwise 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 secondary 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.

 

Alex Twersky  35:05

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?

 

Dr. Jonathan White  35:22

I think that’s a really important question to finish on, and it’s something I would ideally talk about for an hour on its own, to be honest. Nicola, so we know that if, if you or I, so me having MS probably increases the risk of my son by about five times they often talk in in the UK, with our current incidence of being about the chance of about two in 100 of developing MS. If I have it as a parent, odds of your siblings within your generation of developing it 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, 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 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 progression. 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 kilograms of weight. So my three year old weighs 20 kilos, just about so I give him a 3000 unit spray on alternate days. That’s just because that’s convenient method we have for him, and he likes the taste. So if I give him that on alternate days, or 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 5000 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, so it’s to be encouraged. Diet is really, really important. The evidence in terms of the OMS diet preventing MS, that study is not being 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 in 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 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 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 use the parent teaching the importance of managing stress, and of 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 three year old just at the moment, those are the important things, but your genes are not your fit. That’s the most important thing to say.

 

Overcoming MS  39:14

Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at overcoming ms.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 Nev Dean. Our host is Geoff Allix. Our videos are edited by Lorna Greenwood and I’m the producer, Regina Beach. Have questions or ideas to share? Email us at podcast at overcoming ms.org, we’d love to hear from you. The Living Well 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.