← Living Well with Multiple Sclerosis
Living Well with Multiple Sclerosis
MS symptoms and diagnosis: from clinically isolated syndrome to multiple sclerosis | S8E14
00:35:13
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- [00:00]
A
I think it's a really individual thing because I had this sort of halfway house diagnosis. You know, telling people that I'd been diagnosed with something that might turn out to be Ms. Just seemed to be something that was going to induce a lot of worry in everybody close to us. So John and I made a conscious decision in 2012. Just, I mean, people knew I'd had tests and things, but we just decided to tell everyone that I had some inflammation in my nervous system that had caused my symptoms and, you know, take it from there.
- [00:38]
B
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. Pro program, we interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Receive monthly tips and ideas about Living well with Ms. By signing up for our newsletter@overcomingms.org Newsletter and now let's meet our guest.
- [01:16]
C
Welcome to the latest edition of the Living well with Ms. Podcast. Joining me on this edition is Maureen Haith. Maureen and her husband live in York, England, but she was born and grew up in Edinburgh. Her first Ms. Symptoms were in 2002. She loves connecting with others following the program and helps new members to get started and deal with the challenges of a new diagnosis or lifestyle change. So, firstly, welcome Mori.
- [01:42]
A
Thank you very much.
- [01:43]
C
And could you introduce yourself and your MSG journey in a bit more detail?
- [01:49]
A
Well, I think you've made quite a good start, really. So I used to work in the rail industry, but I took early retirement last year, quite unexpectedly, several years before I was planning to because my husband was made redundant and we looked at our pensions and we could afford to do it, so why not, you know, wrap the opportunity? So we. I've really enjoyed ourselves the last six months, you know, traveling and just taking life a little bit more easy. So it's lovely to not get up at 6 o' clock to go to the gym or swimming before work. You know, I can get up at a much more civilized seven o'clock nowadays. You've already introduced my Ms. Journey, so which started.
- [02:39]
C
So what were your symptoms in 2002? Did you have.
- [02:44]
A
From what I can remember, I'd had some sort of virus and I just didn't pick up after it. I had real fatigue. I also had a three year old and a one year old at the time, but I had real fatigue and I had a lot of tingling on my face and I can remember just getting really Worked up about it and being on the phone to the out of hours gp. And I think my gp, you know, he thought, well, we'll just, you know, we'll send you to neurology because then we're doing something positive and you might feel better about it. So. So I had to wait three months till I saw. Saw a neurologist and he, you know, went through all the standard steps. You know, I'd been walking across the room and things and. And said, oh, everything's fine. So. So I was discharged with no real guidance as to, you know, how to follow up if anything came after that. But I then had nothing for 10 years. I think I stopped working about 18 months after that to, you know, concentrate on bringing up our daughters. So I think the stress levels just completely went down. You know, I was doing lots of exercise, walking to and from school and things, so I've no doubt that all that helped keep it at bay. So. Because I'd only been working full time for about three or four months by the time I started getting symptoms again at the start of 2012, so. And then.
- [04:24]
C
And then what were they symptoms? Were they the same or different?
- [04:27]
A
No, they were different. So I've never had facial tingling again. I don't, fortunately, I don't suffer from a huge amount of fatigue. The symptoms then were. I started just really weird, walking up the stairs and losing a shoe. You know, there was one particular pair of shoes, court shoes, and one of them kept falling off and I was like, you know, what's going on here? And then I started tripping up a bit when I was, you know, walking outside. And then one Sunday morning I woke up and I couldn't feel the soles of my feet. And that was the point at which I thought, something really isn't right here. But it took me another three or four weeks, I think, to go and get a doctor's appointment. When it wasn't going away and the numbness was starting to travel up my legs, I thought, yeah, I think we need to take further steps.
- [05:21]
C
And so they mentioned clinically isolated syndrome. So could you tell us a bit about what clinically isolated syndrome is?
- [05:32]
A
Yeah, so I'd. So I'd gone through all the, you know, I'd had an MRI in 2012 over the summer, I had a lumbar puncture. And then when I went to get all the results back, she said, so you have lesions, you've got when your lumbar function bans signs that something wasn't right. But she said, we're not gonna give you an Ms. Diagnosis because this is the first time you've presented with symptoms. She wasn't including what had happened 10 years previously. So she said clinically isolated syndrome, which I'd never heard of. And I think even a lot of people who've got Ms. Have never heard of clinically isolated syndrome. But it's just the first, the first relapse that you have can be counted as clinically isolated syndrome. And some people go on to develop Ms. And other people don't. So she asked if I wanted to know what the chances were of me going on to develop Ms. And I said no, thanks, because it's not gonna change. Whether it does or not, I'm not entirely sure, but I think it's possibly less likely to get diagnosed with it these days because diagnostics are a lot better. When I was finally diagnosed with ms, the neurologist said that they'd changed the criter, the diagnosis criteria since 2012 and that if they'd been, you know, if the current criteria had been there in 2012, then I would have been diagnosed with Ms. Straight away.
- [07:07]
C
Yeah, I know. For me it was how many relapses you'd had in a certain set period of time. And it was. And one of them was borderline. I was like, well, I'm not 100 sure. It might have been December, it might have been January. He said, well, if it's January, then it counts as Ms. And if it was December, it wouldn't. So therefore I'd recommend you put in January if you want to be so. Because it was very arbitrary, like number of years. It's like. Well, he said there's no logic to it. It's just like they just decided this period of time.
- [07:38]
A
So, yeah, it seems as much an art as a science really sometimes.
- [07:44]
C
But like you say, I think it has hopefully moved on a little bit. That is clinically isolated syndrome. Just the first step of, you know, and probably. Should you be taking people be taking more care of themselves if they've got one instance? Because that's the M of ms, isn't it? It's multiple sclerosis. It's not just one.
- [08:04]
A
Yeah. And I mean, I was, I was sent away with no follow up in 2012. You know, go and see your GP if you have any other symptoms. The neurologists weren't keeping an eye on me to see if things had changed.
- [08:15]
C
And you waited a long time to tell friends, family about your health. So is there a good or bad way, do you think, to disclose a Diagnosis at, you know, of Ms. Or anything else of that major.
- [08:34]
A
I think it's a really individual thing because I had this sort of halfway house diagnosis. You know, telling people that I'd been diagnosed with something that might turn out to be Ms. Just seemed to be something that was gonna induce a lot of worry in everybody close to us. So John and I made a conscious decision in 2012. Just, I mean, people knew I'd had tests and things, but we just decided to tell everyone that I had some inflammation in my nervous system that had caused my symptoms and, you know, take it from there. So, and, and we didn't really, we didn't talk about it from 2012. I didn't research anything to do with Ms. Or clinically isolated syndrome. I just sort of buried it under the carpet. And um, and it wasn't until 2015 I read an article and the author just had a simple sentence in there. It was about healthy eating that said that autoimmune disease can be helped by diet. And I thought, wow, maybe there's something I can do about this to, to maybe prevent me, I forget an Ms. So that was when I turned to Dr. Google and found Overcoming Ms. Quite quickly. So it was at that point that we felt we had to tell family and close friends about the diagnosis. I was a meat and two veg sort of milk drinking, cheese eating person, you know, and then to go from that to almost exclusively plant based with a bit of fish is. It's quite a huge step. So you feel the people closest to you, you owe them an explanation. But I still didn't feel confident enough to tell anyone outside of our close circle. I certainly didn't tell anyone at work, not because I felt I might be discriminated against, but just because I didn't want people making a fuss really. So I just, if people asked why I'd changed my diet, I said, oh, it's just for my health, you know, I've got a bit of inflammation in my body and the diet's anti inflammatory. So that was a good enough explanation. And it wasn't until I had more symptoms in 2019 that I actually. People at work that that was. And it was before diagnosis but you know, I told them at that point I think I'm probably going to get an Ms. Diagnosis this year. I think I didn't fully disclose to everyone until 2021 when we were on holiday in the Scottish Borders and John and I had done a bit of a, bit of a walk up a hill, bit of a climb and I'M looking at this amazing view and I thought, it's just brilliant that I can still do this. And I felt I wanted to tell everyone that I could still do it, so. So I posted on Facebook with a picture of this nice view and told everyone, then you just have to do whatever you feel is right for you.
- [11:53]
C
Yeah, exactly. It's going to be a completely individual and I think with employers as well. I mean, I told my employer and you told your employer and I think my employer was very supportive. But equally, there's people in my circle who've, you know, it's going to tribunals and things. You. You would just have to base it on. On your employer, I think.
- [12:12]
A
Yeah.
- [12:13]
C
And. And your family and friends, how they would take it. So the other thing, Ms. In family. So a lot of us, myself included, have close family members with ms, so there's a family pillar of, of overcoming Ms. So can you tell us a bit about. I mean, it's. Is it much more likely to have Ms. In families? I mean, I don't believe it's a genetic necessity. Isn't it? If you have ms, your children aren't necessarily going to get ms, but is there an increased risk?
- [12:48]
A
Oh, I definitely think so. My brother, who's a couple of years younger than me, was diagnosed with Ms. In 2023, so again, quite a late diagnosis, in his 50s. And I think it was quite a shock to find that we both had ms, but we were brought up in the same environment, so we ate the same food, we had the same lack of vitamin D because we grew up in Scotland and we know the further north you are in the uk, the higher your risk of Ms. Is, so it maybe isn't genetic. We are aware that the, the family pillar is important. We've got five children between us who are all in their 20s, all living independent lives, so we haven't convinced any of them to follow the program. They're aware that they should be taking vitamin D and I think sometimes they do, sometimes they don't. But once they're adults, you've got to let them live their own lives, really.
- [13:52]
C
Yeah. And I think that's the case everyone. I think if at least we can make our children aware, can't we? And, and, and equally with. So for me it's my. My father had ms, so my, my brother's aware that there's the same genetics. He hasn't got ms, but the, but his children are, you know, probably similar risk to my children, so they're aware of it and they, they all take vitamin D and they all have quite good diets and lifestyles, and so they're reducing their risk. So. Overcoming Multiple Sclerosis by George Janelek. A lot. There's. There's been a subsequent book, a handbook, which is a lot shorter because the original Overcoming Ms. Book is a science book, really. It's got pages of references at the end. I did dive straight into it, to be honest. I'm quite a science sort of person. But it is a very difficult read. So I believe that you and the producer of the podcast Gina formed a book club to read Overcoming Multiple Sclerosis by George Jalek. So tell us about that. And was that beneficial?
- [15:02]
A
It was. I mean, like you, I'd dived into the book as soon as I got it in 2015 and, you know, read it from COVID to cover, excluding all the references. I'd occasionally referred back to it over the years, but it was six years since I'd Reddit. So when I saw Gina posted on the Facebook group that she, you know, was feeling a bit. A bit intimidated by the book and wondered if anyone else would like to join a book club. So myself and one other bloke, you know, the three of us were the core of this group. There was an odd person joined, you know, now and again, but. But it was. It was a lovely experience. It was really beneficial to go over it and not just read it again, but then discuss every chapter with people. I think it really helped.
- [15:54]
C
Yeah, I think having that. That's a really good point, actually, the additional bit of discussing it because it would be so easy. It's a big book to scan over one bit. Or you're just not concentrating a bit and then maybe discussing it, you'd look into things in a different way. Yeah, I read it myself, but I've never. Yeah. Gone through it.
- [16:15]
A
Yeah. And you heard other people's experience as well, you think? I've no doubt, because this was in 21. So I've no doubt that that experience helped me to. To decide that I would tell the whole world that I had Ms. Felt much more comfortable about it after that. Like, now there's the six months to. To overcome an Ms. Program, but that wasn't there in 21. There were various webinars and things weren't there, but. But there wasn't a specific program unless you went on a retreat. It fulfilled that need at that point in time.
- [16:48]
B
Are you ready to connect, learn and feel inspired? Register your interest in our latest events and courses by visiting overcomingms.org events to find out more.
- [17:02]
C
And so we mentioned the ambassador of the York Circle. So how is it being part of a circle and what's it involve?
- [17:13]
A
It's great being part of a circle. And the reason I decided to become an ambassador was because of the book club connecting with other people regularly to just chat about all things overcoming Ms. I really enjoyed that. So I tried joining the nearest circle to me, but it wasn't really active. So I thought, right, well, if you want it, you're gonna have to do it. Your I already knew I had one friend in York who was following the Overcoming Ms. Program. We met completely by chance in Edinburgh in 2019 when there was a day conference. So just incredible to sit next to someone and say, where'd you come from? And find that they lived less than two miles from you. So. And we joked about being our own private circle, but it was good to. To widen that and, and invite others in. The circle's got. I counted them up today because I wanted to know for this, 30 members, which sounds like it's a really big circle, but the majority aren't really active. Some have been in the past and aren't now. You know, they've maybe felt they've outgrown the need for a circle. We did quite a lot of zoom stuff initially and then in the last year or so we've done more actual physical meetings. We found a lovely big cafe, lounge, bar place on a retail park on the outskirts of York, which is just an excellent place to meet because there's lots of space. The tables are quite widely separated, so there's room for people to come in with mobility scooters or aids if they need to. And you don't feel like other people are sitting ear wigging on your conversation from other tables because you're a bit separated. There's nothing like getting physically together to chat things over. So that's been, that's been really lovely and people have enjoyed that. So. And you find you do. You talk about the pillars of overcoming ms, you talk about the obstacles in life, et cetera, but as you get to know each other, you start to. You talk about everything else in life as well. So, yeah, it becomes a bit of a friendship group as well.
- [19:45]
C
And I think there's an element that because we all are in the similar situation, we kind of don't have to explain that bit of our lives. So it's almost easier to talk about the other things without, you know, we're not going to say, oh, how are you getting on with that? Diet you do or, or like anything like that because we, we kind of know that that's a given and now we can chat about our kids and the problems they're causing us and.
- [20:08]
A
Yeah.
- [20:09]
C
Other random things and the other thing, I think. Well, I definitely encourage people to join a circle because it's, we've got a condition that's common enough that it's not rare. You know, there's, there's millions of people in the world who've got ms, but it's rare enough that you probably don't know another person in your local village or community. So I'm not going to bump into anyone else who's got Ms. Yeah, and, and chat about it, but so it's really nice to get together and have that community. I think it's really supportive.
- [20:42]
A
It is. And even if you do know other people with ms, if they don't follow the program, then their outlook on it can be quite different.
- [20:52]
C
So on the diet, Pelly, you mentioned that you now like to travel, which is fantastic. So do you have any tips for people who are following the diet when you're traveling, whether that be internationally or whether it's eating at restaurants? How do you get around that?
- [21:11]
A
It doesn't seem like such an obstacle as it was to start with. To start with, I used to think, oh, I'm never going to eat out again, you know, but. And I think provision has got a lot better over the last 10, 11 years. We love to travel independently around Europe by train. We just love the freedom of it, you know, it's a really nice way to see Europe. I don't really very much like flying, so it ticks that box for us as well. And we both worked in the rail industry so we're quite comfortable with trains. So when, whenever we go away, we always choose self catering accommodation in Europe because then you've got a kitchen. It might not be a very well equipped kitchen, but you can, you can certainly do your breakfast there, maybe prepare lunches to take out with you and then you can do a mix of eating out or staying in. And you know, we tend to cook very simple things like pasta, couscous, salads, fresh vegetables, really nice stuff. And we always try and choose an apartment with a balcony and then you can sit outside and you still feel like you're on holiday when you're, when you're enjoying your food. So it's probably the only time that I, I buy ready made pasta sauces, you know, like tomato sauces, because you can get ones that are fairly Compliant, you don't want to spend all your time cooking when you're on holiday. As far as eating out is concerned, I think the Happy Cow app is brilliant for wherever you're traveling in the world. It's designed for vegans but you can set it to, you know, show just vegan restaurants or restaurants that provide vegan options. And okay, you're not always going to find something there, but you can generally go to their website, have a look at their menu, etc. We found it very beneficial in France on holiday and actually when we were in Paris about four years ago, we found the most amazing plant based restaurant, emphasis on healthy food. We've been there, we've been back there since and it's, it's one of the best plant based restaurants I've ever found and you would think that in France you would find that, but it was lovely. One of our favorite places to go is Italy. So and in Italy I don't tend to use a happy co op because every Italian restaurant has got something that you can eat.
- [23:38]
C
Yeah, my, my go to Italian if I'm not in Italy. And we, we have gone to Sardinia in Italy quite a bit. But there are Italian restaurants in lots of other places and Italians, it's a normal thing to have pizza without cheese on it. A lot of their pizzas don't have cheese.
- [24:01]
A
Yes, I think, I think I once caused minor offense to a waiter in a restaurant in Rome, in the Vatican City actually when, when I sort of checked, you know, this tuna and olive pizza doesn't have cheese, he was like, no, no cheese.
- [24:17]
C
And the other thing I would say is that if you look in the resources section of the Overcoming Ms. Website, you can find the recipe cards translated into several different languages. Not all languages for those other places. Greece for example, is one. I've done Google Translate and I'm sure there are other translation services and then I've actually posted it on to the circles in those countries to say, can you check this is okay? And, but it has so far been good. And then you've got a translation to say, but I think the other thing, you get some tips, don't you? Like you think, well, if I'm eating vegan, vegan isn't the same as what we eat. But I know that if it's vegan I just need to check is it fried? Has it got coconut in it? It's pretty straightforward then to know like if they haven't fried it then, then we're most of the way there.
- [25:15]
A
You sometimes order things in restaurants, don't you? And it comes and you think oh there's quite a lot of oil in this. But, and I think you're more sensitive to it because you don't normally have it. But my attitude is, you know, it's a one off. I'm not going to stress about it. I think you can cause more harm by stressing over what you're eating than just enjoying what you're eating and thinking, right, well we'll double down tomorrow on the efforts to be super compliant.
- [25:45]
C
Yeah, I mean I think I probably would say in Thailand I had more coconut than I would have been happy with because it's very difficult. They put coconut in everything. So I just tried to limit it as much as I possibly could. But like, like you say, I think there, there's a distress element there as well. Having a very mindful, pleasant holiday. Probably there's trade offs but yeah, we have to just try. So one thing that the people following overcoming Ms. Is that we lose a lot of weight and, and suddenly eating a whole fake whole fat food plant based diet, you can start to lose a lot of weight. And I think initially when people go onto the program they can get worried about this because they start losing weight. So do you have any tips for people who are losing a lot of weight and a way of keeping your weight at a healthy level?
- [26:40]
A
Yeah, I lost over half a stone quite quickly when I changed my diet to the point that people were saying, oh, are you all right? So snacking is just the key for me. I can go from meal to meal without feeling the need to snack because what you're eating is quite filling. But if I feel like I've lost a bit too much weight then I make sure that I make a conscious effort to snack and things like medjool dates, almonds, seeds, homemade energy bites which I usually put a bit of cacao powder in so I get that nice little chocolate hit as well. And also I have a plant milkshake that I make using cashew nuts and dates and silken tofu. So because then you're getting lots of calories. It's, it's almost like having a whole meal but, but you just drink it. So, so yeah, you can squeeze an extra meal into your day that way
- [27:49]
C
and you can definitely, I think, I think maybe there's an element that if everyone ate this way then there wouldn't be such a weight problem. Cause I think you just eat. I just eat when I'm hungry now and I just eat and, and, and sometimes I'LL eat a lot of food. And I and my wife go, wait, you're having a big portion now? It's like, well, I'm hungry. And I'm just completely go with, if I'm hungry, I'll eat more or less. And then I think it. I think it's the, the. I think it might be. I don't know, I'm not a dietitian, but maybe it's the processedness of food, because I know that I've read a lot of things about that, actually. They're processing food is tricking the brain into letting you eat more, which the.
- [28:29]
A
Yes.
- [28:29]
C
Food companies like, because you. They can sell you more food. But if you're eating whole food, then your body knows what it needs and you stop being hungry when you've eaten enough.
- [28:40]
A
Yeah. And I think, you know, we're almost programmed to be overweight these days. So when I lost that weight, it was quite pronounced to people. But I was hugely reassured. Last year, I went to the GP for something and she says, oh, she says, well, we haven't weighed you for a while. You know, pop on the scales and. And she says, oh, you weigh exactly the same now as you did in 2005. And I was like, wow. So. So I thought. And, you know, that was 10 years before I started the program. It was a time when I was doing a lot of exercise, walking my children to and from school every day. I was doing over two miles a day because we always walked if we, you know, if the weather wasn't absolutely horrendous. So it's just an active lifestyle and a good diet do keep the, you know, keep the weight down. So. And yet I'd spent years stressing that I was a lot lighter than I had been, but actually that had just been weight that I'd put on as I got. As my lifestyle got more sedentary and as I aged as well, you know,
- [29:48]
C
so onto a different symptom. You. You also, I believe, had brain fog as one of your symptoms. So lots of people with Ms. Get brain fog. So do you have any tips for assisting your memory and reducing that cognitive load that people get?
- [30:06]
A
Yeah, definitely. Your smartphone is your friend. I use reminders daily on my smartphone for everything from remembering to do my overnight oats to, you know, to put them on at night. And I do it every day, but I can still forget to, you know, remembering to book my swim, to pay bills. I use the timer on my phone all the time if I've got something cooking and I'm Going away from the kitchen because there's nothing worse than suddenly remembering that you put, you put something in the oven an hour ago and you've, you know, you should have taken it out half an hour ago or a pot of soup's been sitting on the top for two hours. And I put everything in my calendar, everything that I'm doing goes in my calendar on my phone so that I see it in the morning and I think, oh, yeah, I'm doing that today. I think the other thing that I used to do, which is just sort of taking the mental load off is when I was working, I had a four week rule and meal plan, so I never had to think about what we were going to eat, you know, or what I had to shop for. Because working full time, it is tiring and more so when you've got Ms. And the last thing you want to do is think, oh, what are we going to eat this week? So, yeah, that just reduces the mental load a bit.
- [31:36]
C
And four weeks is enough, isn't it? You don't feel like you just had that thing recently and you get a
- [31:41]
A
nice variety then as well, you know, you don't end up eating the same thing week in, week out.
- [31:48]
C
So as a final question, um, which we often ask, do you have any recommend recommendations for someone who is newly diagnosed? Maybe they're new to the Overcoming Ms. Program and maybe they haven't actually been diagnosed yet, but they're fairly sure that they've got multiple sclerosis. So what recommendations would you have to those sort of people?
- [32:10]
A
I think not stress about the program. You know, you don't have to change your diet overnight. I did it within about a month, which felt right for me. And I was working up to, you know, the date I decided that I was going to completely follow it was just after a family wedding. So I thought I don't have to at short notice try and get menu changes for the event or anything. So, yeah, and that worked for me and it gave me a bit of time to work out some recipes, etc. And I think you don't have to do it all at once either. I didn't fully adopt the exercise program until I'd been following OMS for five years. So. And at that point in 2021, a local leisure center opened just 10 minutes walk away. So I thought, right, I'm gonna. We'd been waiting for it got delayed by Covid. So we'd been waiting for it to open for, you know, it felt like years. But when it opened, I going to go and become a member. I'm going to swim and go to the gym. And since then I've done that gym and swim two or three times a week. So. So yeah, it's never too late to, to start following one of the pillars. So at some point I might, I might knuckle down on the meditation. It's priorities, isn't it? But, but yeah, I mean, I think I'd say things have got to fit into your lifestyle. You can't force things in. You know, at that, at the point when I joined the gym, I was working from home, so it was easy to go first thing in the morning and then come back and start work. And it didn't disrupt my day at all. So if you try to force something into your life, you're setting yourself up more for failure, I think.
- [34:07]
C
Okay with that. Thank you very much for joining us.
- [34:10]
A
Maureen Heist thank you very much, Geoff. It's been a pleasure to be on.
- [34:15]
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 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 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.