S8E14: MS symptoms and diagnosis: from clinically isolated syndrome to multiple sclerosis

Overcoming MS (00:39)

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 programme and helps new members to get started and deal with the challenges of a new diagnosis or lifestyle change. So firstly, welcome Maureen. And could you introduce yourself and your MS journey in a bit more detail?

 

Maureen Haith (01:05)

Thank very much. Well I think you’ve made quite a good start really. I used to work in the rail industry but I took care of the 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 grab the opportunity. We’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 six o’clock to go to the gym or swimming before work you know I can get up a much more civilized seven o’clock nowadays you’ve already introduced my MS journey.

 

Overcoming MS (02:02)

So what were your symptoms in 2002?

 

Maureen Haith (02:06)

From what 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 Virus GP. And I think my GP, he thought, we’ll send you to neurology because then we’re doing something positive and you might feel better about it. So I had to wait three months till I saw a neurologist and hey you know, went through all the standard steps, you know, I’d been walking across the room and things and said, everything’s fine. So I was discharged with no real guidance as to, you know, how to follow up if anything came after that. But, 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 and at the start of 2012.

 

Overcoming MS (03:46)

And then what were the symptoms? Were they the same or different?

 

Maureen Haith (03:49)

No, they were different. 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, 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 you know 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 it was the numbness was starting to travel up my legs I thought yeah I think you know we need to take further steps.

 

Overcoming MS (04:44)

And so they mentioned clinically isolated syndrome. So could you tell us a bit about what clinically isolated syndrome is?

 

Maureen Haith (04:55)

Yeah, 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, in your lumbar puncture there’s bands. signs that something wasn’t right. But she said, we’re not going to give you an MS diagnosis because this is the first time you’ve presented with symptoms. She wasn’t included in 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 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 going to 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 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.

 

Overcoming MS (06:29)

Yeah, I know for me it was how many relapses you’d had in a certain set period of time 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 a number of years. like, well, he said, there’s no logic to it. It’s just like, they just decided this period of time.

 

Maureen Haith (07:02)

Yeah, it seems as much an art as a science really sometimes.

 

Overcoming MS (07:06)

But like you said, I it has hopefully moved on a little bit that is clinically isolated syndrome just the first step of, and probably should 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.

 

Maureen Haith (07:24)

Yeah, yeah.

 

Yeah, and I mean, I was sent away with no follow-up in 2012, you know, go and see your GP if you have any other symptoms. The neurologist went keeping an eye on me to see if things had changed.

 

Overcoming MS (07:38)

You waited a long time to tell friends and family about your health. Is there a good or bad way do you think to disclose a diagnosis of MS or anything else of that major?

 

Maureen Haith (07:42)

I think it’s a really individual thing because I had this sort of halfway house diagnosis. 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 just take it from there. 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 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 maybe prevent me ever getting MS. So that was when I turned to Dr. Google and found Overcoming MS quite quickly. 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. you feel, the people closest to 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’ve changed my diet I said it’s just 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 told 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.

 

But 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 walk up a hill, a 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 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 at a time that suits you.

 

Overcoming MS (11:16)

Yeah, I think exactly.

It’s going to be a complete individual. And I think with employers as well, I 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 going to tribunals and things you would just have to base it on your employer, I think. And your family and friends how they would take it. So the other thing, MS in family. A lot of us, myself included, have close family members with MS. So there’s a family pillar of overcoming MS. So can you tell us a bit about, mean, is it much more likely to have MS in family? I I don’t believe it’s a genetic necessities that you don’t if you have MS your children aren’t necessarily going to get a mess, but is is there an increased risk?

 

Maureen Haith (12:08)

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 fifties. And I think it was quite a shock, to find that that we both had MS.

But, we were brought up in the same environment. So, we ate the same food. we the same lack of vitamin D. So 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 family pillar is important, we’ve got five children between us who are all in their twenties, all live in independent lives so we haven’t convinced any of them to follow the programme. 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.

 

Overcoming MS (13:15)

Yeah, and I think that’s the case. I think at least we can make our children aware, can’t we? And equally with, so for me, it’s like my father had MS, so my brother’s aware that there’s the same genetics. He hasn’t got MS, but his children are probably similar risk to my children. So they’re aware of it and 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 Jelinek. There’s been a subsequent book, a handbook, 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 Mortal Sclerosis by George Jelinek. So tell us about that, was that beneficial?

 

Maureen Haith (14:23)

It was, I mean, like you, I’d dived into the book as soon as I got it in 2015 and read it from cover to cover, exclusion, all the references. I’d occasionally referred back to it over the years, but it was six years since I’d read it. So when I saw Gina posted on the Facebook group that she was feeling 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 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.

 

Overcoming MS (15:17)

Yeah, 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. Because I certainly haven’t done that, I read it myself, but I’ve never gone through it with anyone.

 

Maureen Haith (15:33)

Yeah, and you had other people’s experience as well, I think I’ve no doubt, because this was in 21, so I’ve no doubt that that that experience helped me to decide that I would tell the whole world that I had MS, I felt much more comfortable about it after that.

 

Like, now there’s the six months to, to Overcome an MS programme, but that wasn’t there in 21. There were various webinars and things, weren’t there? But there wasn’t a specific programme, unless you went on a retreat. It fulfilled that need at that point in time,

 

Overcoming MS (16:11)

Are you ready to connect, learn, and feel inspired? Register your interest in our latest events and courses by visiting overcomingms.org slash events to find out more.

 

Overcoming MS (16:24)

And so you’re, we mentioned the ambassador of the York Circle. So how is it being part of a circle and what’s it involve?

 

Maureen Haith (16:35)

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 going to have to do it yourselves.

I already knew I had one friend in York who was following the Overcoming MS programme. We met completely by chance in Edinburgh in 2019 when there was a day conference. just incredible to sit next to someone and say, where do 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 widen that and invite others in the circles 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 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 really lovely and people have enjoyed that. And you find, 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 so yeah it becomes a bit of a friendship group as well.

 

Overcoming MS (19:08)

And I think there’s an element that because we all are in a similar situation, we kind of don’t have to explain that bit of our lives. It’s almost easier to talk about the other things without, you we’re not going to say, how are you getting on with that diet you do or anything like that, because 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 other random things.

And the other thing I think, I definitely encourage people to join a circle because we’ve got a condition that’s common enough that it’s not rare. 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 and chat to them about it. But so it’s really nice to get together and have that community. I think it’s really supportive.

 

Maureen Haith (19:58)

Yeah. And even if you do know other people with MS, if they don’t follow the programme, then their outlook on it can be quite different.

 

Overcoming MS (20:14)

So on the diet, you mentioned that you’ve now 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?

 

Maureen Haith (20:19)

It doesn’t seem like such an obstacle as it was to start with. To start with I used to think, 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 railways industry so we’re quite comfortable with trains. 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 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.

 

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 enjoying your food so it’s probably the only time that I buy ready-made pasta sauces, know like tomato sauces because you can get one that are fairly compliant you don’t want to all your time cooking when you’re on holiday.

As far as eating out is concerned, think the Happy Cow app is brilliant for wherever you’re travelling in the world. It’s designed for vegans, but you can set it to show just vegan restaurants or restaurants that provide vegan options. 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 foods we’ve been there we’ve been back there since and 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 favourite places to go is Italy so in Italy I don’t tend to use the Happy Cow app because every Italian restaurant has got something that you can eat.

 

Overcoming MS (23:00)

Yeah, my go to Italian, if I’m not in Italy and we have gone to Sardinia and Italy quite a bit, but there are Italian restaurants and 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.

 

Maureen Haith (23:14)

Yes, I think I once caused minor offence to a waiter in a restaurant in Rome, in the Vatican City actually, when I sort of checked, you know, this tuna and olive pizza doesn’t have cheese. He was like, no, no cheese.

 

Overcoming MS (23:40)

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 hasn’t 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, you just need to check is it fried has it got coconut in it it’s pretty straightforward then to know that if they haven’t fried it then then we’re most of the way there.

 

Maureen Haith (24:38)

You sometimes order things in restaurants, don’t you? And it comes and you think, 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, well, I’m gonna go double down tomorrow on the efforts to be super compliant.

 

Overcoming MS (25:08)

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’ve put coconut in everything so I just tried to limit it as much as I possibly could. but like you say I think there’s the stress element as well having a very mindful pleasant holiday probably there’s trade-offs but yeah we have to just try. So one thing that of people following Overcoming MS is that we lose a lot of weight and suddenly eating a whole 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 losing a lot of weight and a way of keeping your weight at a healthy level?

 

Maureen Haith (26:03)

Yeah, I lost over half a stone quite quickly when I changed my diet to the point that people were saying, are you all right? So, snacking is, it’s just the, 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 then I make sure that I make a conscious effort to snack so and things like medjool dates, almonds, seeds, homemade energy bites which I usually put a bit of cocoa 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. Because then you’re getting, you’re getting lots of calories. It’s almost like having a whole meal, but you’re just drinking. So yeah, you can squeeze an extra meal into your day that way.

 

Overcoming MS (27:12)

And can definitely, think maybe there’s an element that if everyone ate this way, then there wouldn’t be such a weight problem. Because I think you just eat, I just eat when I’m hungry now. just eat and sometimes I’ll eat a lot of food. And my wife go, why are you 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. then I think it might be, I don’t know, I’m not a dietitian, but maybe it’s the processedness of food. 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 food companies like because 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.

 

Maureen Haith (27:52)

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 waited for a while, know, pop on the scales. And she says, oh, you weigh exactly the same now as you did in 2005. And I was like, wow. 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 the weather wasn’t absolutely horrendous. It’s just an act of lifestyle and a good diet to keep the weight down. 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 more sedentary and as I aged as well, you know.

 

Overcoming MS (29:11)

So onto a different symptom. You also, I believe, had brain fog as one of your symptoms. So lots of people with MS get brain fog. Do you have any tips for assisting your memory and reducing that cognitive load that people get?

 

Maureen Haith (29:29)

Yeah, definitely your smartphone is your friend. I use reminders daily on my smartphone for everything from remembering to do my overnight oats, to put them on at night, and I do it every day but I can still forget. To 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 something in the oven an hour ago and 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 so everything I’m doing goes in my calendar on my phone so that I see it in the morning and I think yeah I’m doing that today I think the other thing that I used to do which is just it’s sort of taking the mental load off is when I was working I had a four week rolling 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 what are we going to eat this week so yeah that just reduces the mental load a bit.

 

Overcoming MS (30:59)

Four weeks is enough isn’t it? don’t feel like you just had that thing recently.

 

Maureen Haith (31:01)

It is. Yeah, and you get a nice variety then as well, you know, you don’t end up eating the same thing week in, week out.

 

Overcoming MS (31:10)

So as a final question which we often ask, do you have any recommendations for someone who is newly diagnosed, maybe they’re new to the overcoming MS programme 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?

 

Maureen Haith (31:33)

I think not stress about the programme, 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 short notice, try and get menu changes for the, for the event or anything. So yeah, and that worked for me and it gave me 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 centre opened, just 10 minutes walk away. So I thought, right, I’m going to, 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 thought, right, I’m 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 yeah, it’s never too late to start following one of the pillars. So at some point I might knuckle down on the meditation.

It’s priorities isn’t it? yeah, I mean think I’d say things have got to fit into your lifestyle, you can’t force things in. You know, 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.

 

Overcoming MS (33:30)

Okay, with that, thank you very much for joining us. More in height.

 

Maureen Haith (33:34)

Thank you very much, Geoff. It’s been a pleasure to be on.