Breaking it down live - MS: your emotions and feelings

During MS Awareness week we aired a live podcast were we talked all things MS, emotions and feelings. Our recent survey of over 2,000 people living with MS, revealed that 56% feel that MS negatively impacts their mental health. 

We were super excited to be joined by two excellent guests, who answered questions from the viewers:

 - Roshan das Nair
• Senior Research Scientist, SINTEF, Norway
• Professor of Clinical Psychology & Neuropsychology, University of Nottingham, UK

- Dr Cora Sargeant, Educational Psychologist and presenter of Sciencing the s**t out of MS.

Show notes
-MS and your feelings, especially for people who are new to MS shop.mstrust.org.uk/publications/ms-and-your-feelings/
- This hub on our website connects you to all kinds of options to support your emotional wellbeing.  mstrust.org.uk/information-support/wellbeing-ms
- Mood matters film: youtube.com/watch?v=euZvutKFimU
- MS Trust Mental health podcast series - It's all in your head

Transcript

Nick

Hi, I'm Nick.

Helena

And I'm Helena. And we both work at the MS trust the UK charity for people affected by MS, we're here to help you make sense of MS

Nick

This week, we are going to be talking to potentially a newer audience as well as our loyal audience as well. And we're going to be talking to people who might be a little bit worried that they may have MS.

Helena

But for you, people who are already diagnosed, please don't turn off. We're going to be sharing an interesting personal story from Dr. Daniel Matheson, more known as the MS doctor on Instagram, and he will chat to us about his diagnosis, share some tips about what you can do if you're worried if you have MS, and how things are now, so please stay tuned for him later on.

Nick

But for now, let's talk about life pre-diagnosis. We know from the MS trust from our helpline and inquiry service so many people get in contact with us who are worried that they have MS. It may be that you are someone in that situation. Maybe someone you know might be. So perhaps you might have looked at MS on the internet and you might have read about all the symptoms. And they could be sounding like the ones that you're experiencing. Perhaps somebody in your family might have MS and you're concerned that there could be a family link too and you might be concerned that the symptoms that you have are MS.

Helena

It's just important to point out that myself and Nick, we're not health professionals. So we're trying to point you in the right direction on where to go, and who to ask if this is something that you worry about.

Nick

As we know, there's a wide range of possible symptoms that could be associated with MS. But most people will only experience a small number of these symptoms around the time of diagnosis. And many won't go on to experience every single symptom of MS. Some common early signs are fatigue, which is that kind of exhaustion, which is completely out of proportion with the task undertaken. Stumbling more than before, some people might think that you might have been drinking or something. And that's often something that we hear that people report to our inquiry service; a stumbling more than usual. Unusual feelings on the skin, so you might have things like pins and needles and numbness, slow thinking and again, this is more so than usual, and problems with your eyesight. And of course, there are lots of other symptoms too. But these are some of the most commonly reported symptoms that people experience around that diagnosis time. All of these early symptoms can also be symptoms of other medical conditions too. So please don't listen to this and think right, well, I've had some slow thinking and some problems with my eyesight, I must have MS. If you are worried that you have MS, it's important that you get in contact with a health professional so that you can get the correct diagnosis. And we'll be talking later to the MS. Doctor  - Dr. Daniel Madison. And he lays out some really good plans in ways that you can do that so that you make sure that your voice is heard and that you can get through to have the correct test. Saying that there is no definitive test for MS around the time of diagnosis. The diagnosis will involve considering all of the various symptoms and your family's situation and ruling out other explanations as well.

Helena

Sadly, there's not just like a blood test that you could have to find out whether you have MS or not. So there'll be a few tests and checks that the doctors will want to do. And it can be a pretty lengthy process. We've heard of people who it's been taking years for diagnose, although encouragingly it seems to be a bit faster these days. My own MS. diagnosis came about nine months after my symptoms started being investigated. But that's by no means any sort of norm of how long it takes. It could be longer, it could be shorter.

Nick

Yes, and going through that experience Helena, who would you recommend people get in contact with first if they're worried about this?

Helena

Well, I think your first point of call should always be your GP to talk about the symptoms that you're experiencing. The GP cannot make a diagnosis of MS but it can act assess your symptoms and rule out alternative conditions that could be causing your symptoms. For instance, I went because I had lots of strange sensations going on. And I had weird feelings that cold was feeling warm and warm was feeling cold. So the GP sort of looked at me and he just sort of wanted to send me up to A&E for a check-up because he just couldn't make sense of what was going on. But in other cases, the GP might not send you to A&E, they may rather make a referral to say, see, and neurologists or other types of specialists. And so if a GP cannot rule out MS, after the tests that they've done themselves, they make a referral to an appropriate specialist. I mentioned the neurologists, that's someone who specialises in nervous systems disorders, including MS. Although not all neurologists are specialists in MS. In particular, if your GP does not think that your symptoms are due to multiple sclerosis, they might refer you to another specialist, if they think that's more appropriate.

Nick

There's so much information that you can use on our website about the diagnosis pathways, and how these usually work. So please do have a look in our show notes for more information. Helena, I don't know if you're if you're anything like me, but whenever I kind of experience something that I'm a bit worried about in terms of my health, I will often jump onto Google and type in the symptoms or look on social media and see what's going on there. Yeah, it's actually not the best approach. I guess. Any thoughts on that?

Helena

Well, can be quite scary, can't it when you when you go on Google. Even post-MS diagnosis, I searched online if there's been some niggles and pains and things and come up with all kinds of really scary scenarios. And I think back in the day when I was diagnosed, I mean, I've had MS for over 15 years, we still had Google back in those days, it wasn't black and white back in those days! But I mean, I was flowing through the internet and looking for all the symptoms myself. And I think you end up wanting to almost diagnose yourself with all kinds of strange kind of conditions. And, and I like we've sort of hinted that it's not always the best route to go down. We also fully understand it's really hard to see your GP at the moment, you might have to wait a really long time. So then it's really easy to jump online. But it can be really bad for your mental health. We do see a huge amount of people who join MS trust Facebook group, or send the MS trust messages where you know, all the social media channels we have, or emails or by the website, asking if their symptoms sound like MS. And there's so many different symptoms that can be MS. So it can be very tricky. And obviously, we can't diagnose you from reading a list of symptoms, you really need to go through all these tests and things from specialists. And there are also so many symptoms that sound like they could be MS. But they might have nothing to do with MS at all. So the best thing to do is to keep on trying to get an appointment with your GP so you can sort of start to get the ball rolling. I also think going online and asking other people that was something I did, I joined some forums back in those days, because I mean, we were almost pre Facebook. And it's so easy to sort of jump on those things and ask people with MS to help you get diagnosed. And a lot of people will sort of say, oh, yeah, that sounds like me. That sounds like me. But by no means does that mean that you have MS either. Even if it does sound like it could be likely. You still do just have to be patient and wait, even though it's not an easy thing to do.

Nick

Yes, definitely, so easy to do that isn't it, to listen to people on the internet who are, with the best will in the world you know, they're trying to offer you their advice. But it's so important isn't it to make sure you get that expert advice, advice about your health especially We've been having a little chat about what you might be going through if you're worried that your symptoms might be MS. We're going to jump into our interview with Dr. Daniel Madison, who you might know as the MS. Doctor. He's also someone who lives with MS himself. But we will be back after the interview and we're going to discuss a few top tips on what to do around your appointments with your health professionals and also how to cope with the uncertainty around that early diagnosis/pre diagnosis phase of the MS journey. So let's jump into our interview. Hello everybody. Welcome back to the podcast. Today we're joined by a guest. So I was wondering, would you be able to introduce yourself for us?

Dr Daniel Madison

Hi, guys. So my name is Daniel. I am an MS sufferer and a doctor. So that's quite a unique perspective. Hopefully I can shed some light from that kind of angle as well.

Nick

So we've heard Dr. Daniel Madison. People who have MS, they might have also seen you on Instagram as well or on social media as the MS. Doctor?  And I know, we certainly have seen lots of your posts, raising awareness of MS. And your journey from where you were to sort of where you are now. So yeah, that's been amazing.

Dr Daniel Madison

I think it was really the reason I did this was when I was diagnosed, I didn't have anything like this. And I didn't know anybody with MS. I knew nothing about MS. or very little. I felt very isolated. And it was quite scary. So I thought, if I can even just give some people some knowledge in the sense that you know, you're not alone here. And this is a very, very common, relatively common disease amongst young people. And obviously, elderly people as well. But yeah, I just wanted to make everybody realise that there's more out there after diagnosis, you know, you can go on with your whole life to live.

Nick

Yes, absolutely. And there's that community out there as well, isn't there for resources or other people raising awareness. That's been really great to see. So after your diagnosis, you felt a bit isolated. Obviously today we're looking at people who may be might be worried that they might have MS, or they may be experiencing some symptoms. I was wondering if you could tell us a little bit about how you first got diagnosed?

Dr Daniel Madison

Yeah, so I'm a bit of an anomaly. So what happened was, I'm going back eight years now, and I was in a previous career as a radiographer. And I got a job in Edinburgh doing the head scans. I was doing neurological research, ironically, and I volunteered for a study as a healthy volunteer. Again, ironically, and this study involves a scan of my brain. So hop on the scanner and next thing I know, we picked up a lesion, no one knows what's going on. At this time, I had nothing. No major symptoms, you know, I probably had a little niggle, but it was quite easy to put back down all the things you know, like, I can remember having blurred vision and I thought I was just tired doing too many shifts, night shifts, etc. Tingling, numbness, you know, trapped in over the gym, that kind of thing. It's very easy to pull these things to another cause. So after I've been on the scanner, we found this lesion, it becomes quite apparent that looking back we’ve had symptoms that have come and gone again, come and gone. And it was very random. And so a few tests later, I was diagnosed with multiple sclerosis at the age of 23.

Nick

Yes that must have been really a really, really difficult time. And it's interesting the way that you say that you put your other symptoms down to something else. And I guess a lot of people in that situation might do the same thing. You know, you said you might have hurt yourself at the gym, or, you know, you had a few vision issues. Maybe it was down to something else. So, I can completely understand that. Definitely, you know you were really lucky, I guess, that you were able to go for that scan, in retrospect.

Dr Daniel Madison

incredibly, incredibly lucky. I think the strange thing is, you know, a lot of people present to the GP with very, very strange symptoms, and there's never an explanation. And it can take years before we actually find out this is multiple sclerosis. Where with me, it was the opposite, like, MS. kind of came to find me if you like, as opposed to me trying to figure out what’s giving me all these funny symptoms. So yes, in hindsight, it was very fortunate. And what I've taken from this is what I would advise to the people and don't ignore symptoms, because I did, you know, I had the blurred vision, and it was like, that's fine, it will get that and it did get better. But that's the nature of MS. You know, you get the peaks and the troughs, you know, the relapses and the remission. And it would come and it would last about a week and it will disappear. And then I forget about it, and I'd keep living very random things. You know, there were times when I couldn't feel my feet. And I didn't think anything about it, and it went. And that was me, I just carried on with life. In hindsight, that was ridiculous, because there was obviously something happening to make me lose sensation. And in both feet. So I just think, yeah, don't ignore these flags, guys, because it could, and I'm not saying it will be, but it could be an early sign of MS.

Nick

Yes absolutely. I guess it's worth mentioning that, just because you're experiencing some of these symptoms, we don't want to scare people and make people think that they have MS. But it's definitely really good advice not to ignore the symptoms. And particularly if, you know, as many of us would do, put them down something else. They’ll come and go, so maybe you might ignore them one day. Particularly, I was just thinking at that sort of young age, you know, when you were diagnosed and stuff, maybe, you know, that you might not think much of it, if you experienced some of those symptoms, you might think, Oh, lots of people have loss of sensation in their feet or something like that.

Dr Daniel Madison

Yeah, I mean, as you say, in hindsight, it sounds really strange thinking like that. But at the time as a 23-year-old, the last thing I thought was, I've got MS. And it didn't bother me in the sense that, you know, I still wanted to go to the gym and I still play football, and it didn't affect my day to day life, other than I'd go to work and be like my legs a bit numb to do things like that. So it was very easy to forget, it was then just carry on. But yeah, in hindsight, it does seem a bit silly that I was just ignoring, these signs. 

Nick

With a job like yours, that must have been quite high pressure. And it's, you know, still high pressure, maybe you might, you know, the fatigue or the numb legs and things like that. Did you put some of that down to the job of working every day, and the gym and that kind of thing?

Dr Daniel Madison

Yeah, definitely, the blurred vision, I put that down to just, I think, I'd worked three or four nights. And it was on a night shift that I had noticed that. And I can remember thinking you are really tired, you need to go to sleep. And I put it down purely to a lack of sleep. I didn't think for a minute that that could be something neurological going on again, I was 23, otherwise fit and healthy. I guess I just ignored the red flags. And again, in hindsight that is very silly. But if I took anything from it, it's what I can advise to older people.. don't do that, you know, there's always a reason for a symptom, no matter how obscure. That's what I'd probably say to that.

Nick  

Obviously you're working as a junior doctor at the moment in hospitals, but from the point of view of someone who was going to see a GP with some of these symptoms, is there anything that you would advise? We already talked about not ignoring the symptoms.. But is there any specific advice that you'd give to people?

Dr Daniel Madison 

Yeah, I think it's important to get a timeline of your symptoms, and how long they last, how long they disappeared. And you know, MS has a very unique pattern in that symptoms are very random. So if you come in to a GP and say, one day, I've had ….and back on after a week, and then my vision went blurry, and then my balance went. That is a pretty clear reason to investigate for MS. I think it's very important to don't be vague when you got your GP give them a really clear story. Just try and write down every symptom you get, and how long the symptoms last. That's the advice that I would give because that gives you a much stronger basis for investigations towards multiple sclerosis. Yeah, absolutely.

Nick

We know how stretched a lot of services are at the moment and how difficult it is sometimes to get that referral or get to see a specialist. So that's really good advice. So you mentioned there sort of writing down the symptoms and how long they last for. And that's often advice that that MS. Trust would talk about as well in terms of keeping a symptom diary. So just make sure that those things are written down, make sure you as you're saying how long these things are lasting for and then yes, so I guess from your side of things from someone who works as a medical professional, as a health professional, you've got a little bit more to work with, I guess then if someone came to a GP and was quite vague.

Dr Daniel Madison

Yeah. So I'd be looking for these pinpoint red flags. So have the symptoms come and go? Are they coming at random? Are they affecting different body parts, you know, things like this would, you know, like I said, if it's affecting different body parts at different times, and it's coming and going, I'd be looking for a family history of MS. For example, things like that. All these things. important to talk with your GP. And just lay it all on the table. And obviously just explain, I am very worried that this could be MS. Can I possibly have this investigated, please. And I think that's very important that a lot of patients don't actually say why they had to come in and what they want. And sometimes people are just scared, you know, and it's important to read it out to your GP and get these things ruled out or, you know, investigated in any way.

Nick

Yeah, it's definitely can be, as we know, it can be a really, really difficult and scary time for lots of people. That was really interesting. So make sure you've got sort of your intention. So what you want to have, what you want the doctor to look at, and why you're worried about it. And then also present your, you know, your symptom diary, your information, and then it's interesting, you're saying about sort of family links as well.

Dr Daniel Madison

Yeah, there is very likely a genetic component to MS. We know that obviously, if you've sibling or your first degree relative has MS, you're more likely to have MS. So there is definitely something there. And family history plays into a lot of things, you know, even just autoimmune disease in general, you know, someone in your family has an autoimmune disease, it's more likely that you're going to be predisposed to an immune disease, or they might not be the same one. For instance, my grandmother has lupus, my mother has rheumatoid arthritis. And Ive got multiple sclerosis which is the link they're very likely to use, you know, but no one in my family directly has multiple sclerosis.

Nick

Yes that's really interesting. And it's interesting to get that family history as well. And that could also help to paint the whole picture for the health professional to get you, that support that you need. Absolutely. So I guess if we could move on from there, so from sort of supporting people going through the process of being diagnosed, I'm just wondering if after you were diagnosed, if you could tell us, if you had any support for other people who they've gone to their GP, they were worried about MS, and they got the information and the tests, and then the diagnosis has come back, that they are now newly diagnosed with MS.

Dr Daniel Madison

Yeah, so this is the part that I didn't do very well, you know, I didn't talk to anybody. Again, I didn't know anybody. And I got very depressed. So I can tell you what to do, or what not to do from experience, because I would advise doing the opposite to it. It's important to recognise that you're not alone. That's the first thing there were a lot of people out there, reaching out to the MS trust is the MS Society and shift.ms is another one, there's, there are so many resources out there. Just talk to people, you know, understand, understand how they've dealt with their diagnosis, or people living with the disease. You know, this is what I'm trying to push on my Instagram that, you know, the message that I'm ultimately trying to get across is that life doesn't end after the diagnosis. Because I thought did you know, and since I trained as a doctor, and I'm still pushing this, and I just think you need to really understand that there is so much more after diagnosis, that it's so important, and it's so easy to not appreciate that.

Nick

Yeah, definitely. And that's really clear on your journey on your social media, is that there's so much after MS. And that feeling from when you're going through your early stages through the diagnosis process, you know, is scary and a lot of people might feel like, you know, this is the start of something really, really difficult to deal with. Yeah, for many people it might be. Yeah, no, there are also people doing lots of amazing things after that diagnosis, too.

Dr Daniel Madison

And I think this is the real this is the sink or swim moment. You know, you decide to do I sit back and let this consume me. Or do I make something good out of a bad situation? The way I look at it, and I think this is a really really good way to look at it. You have a chance now to redefine your life. Yeah, this is this common derailed your life, let's say. So now you've got an opportunity that not many people get my opportunity was I'm going to quit my career and I'm going to train to be a doctor and it changed my life completely. And I wouldn't have done that if I hadn't been diagnosed. So I made something good come off something very bad. And I think that everybody needs to do that, you know, anybody can do it. And I'm not saying, you know, I make it sound really easy, yes I'll go to medical school and anything or anything you're interested in, you know, learn an instrument or you know, read a book, just something that you're passionate about. Make your diagnosis, it's already affected your life. So make it good. Make it good impact. That's, that is my message.

Nick

Wow. Yeah. So do you feel it's kind of gave you that push to go and chase something that you wanted to do?

Dr Daniel Madison

Yes, 100%, I would never have. I had no interest, admittedly, in leaving my career going to medical school. And I did that because of my diagnosis, it was probably seen the neurologists and things like that, that when I had my exposure, I thought I want to get hands on with this disease. So I made that choice. And other things. So I've run the Great North Run for MS. And I would never have done that pre diagnosis, you know, it's like gives you, it gives you like a why, if you like you wake up in the morning, you think, right? Why am I doing this? And it always gives you a reason to move forward. Need to embrace that you really do and you need to embrace it from day one. And I know it's easier said than done. And I didn't do it. So I know that I'm kind of arguably been a bit hypocritical here. I learned this late. And I just I'm trying to help people not make the error I made.

Nick

Yeah, it's an amazing journey and very inspirational. And I'm sure it'll touch a lot of people who are listening. And we wouldn't say that's hypocritical at all. You know, it's your experience, and you're passing on that knowledge. It's such a difficult time for lots of people. Right? And next, in terms of, from where you're going now? Could I ask how you sort of balance at the moment, your MS symptoms and your treatment alongside your job at the moment?

Dr Daniel Madison

Yeah, so this is another good thing about being very open about it. So I get a lot of support from work. So I no longer work night shifts because that would be silly. You know, I can't do that. I think you need to recognise the limitations. So that's another, I could talk all day about things like this. But yeah, I don't work nights, and I take a Wednesday off every week. But that's my choice. Because I know that if I break my week up, I've got a fighting chance to get through the week. MS is exhausting. And you need to know your limits, you need to be realistic. But you can still achieve so much as long as you take a bit more planning, but it is doable. And it's actually quite exciting when you kind of have a focus. 

Nick

Definitely. It's really interesting. You were saying there about being as open as you can with your employer as well. So you can access that support.

Dr Daniel Madison

Yes, definitely. Definitely. I went through this again, going back to what you should not do. I was in my third year of medical school before I told anybody I had MS. I kept looking. And I was making excuses to my friends all the time. Like Dan, can you come out tonight? And it was like, oh, no, I would make anything up. But the truth was, I was taking my injection. And I knew that it was going to make me feel bad for the weekend. And that was every week. So I'd have a different excuse every week. What I should have done is just told everybody, look, guys, I've got multiple sclerosis, and bear with me. And that would have been a much easier thing. It's because the stress of lying, is it lying? The stress of covering up the truth is something that you can avoid. And I would advise avoiding that. 

Nick

So many people listening to this will have had similar experiences. And as we were saying, it is such a difficult time in someone's life. So you know, of course, people are going to do things like that. No, of course, there will be lots of people who don't feel comfortable sharing that information straightaway with other people. But it's really interesting that you've said, you know, it's good to talk about MS. It's good to talk about you're worried that you might have MS, be as open as you can with other people. And actually, it's as you're saying, Not telling people actually became quite stressful for you.

Dr Daniel Madison

I felt like I was kind of living a lie. Because behind closed doors, I'm dealing with this at the time, monster, let's call it, but then I'd be going out with my friends and I'd be smiling and I'd be you know, nobody knew I had MS. And I was trying to live this life that I knew wasn't really me. And it's so much more empowering. And partly making it my Instagrams helped me do this as well just be so open about who you are. Because it's not To be ashamed of, you know? That's what’s really pushed.

Nick

Yeah, absolutely. And that openness and talking about it is so important, isn't it? So, from our talk today, if anyone's out there who's worried that they have MS, we talked about keeping a symptom diary, making sure when you go to your health professional, your GP, that you show them your diary, you discuss your symptoms, but also you tell them why you're worried, you're worried because if you think that you might have MS, you might have something else. And that you'd like to get someone to look at that. And also talk about your family history in terms of medical conditions as well. And then also to talk about it with other people to be as open as possible to access some of that support that's out there, whether that's through the MS trust, or any other organisation, to make sure that you look after yourself and look after your mental health, too. But is there anything else that you would suggest doing as sort of a final tip for people who might be worried that they have MS?

Dr Daniel Madison

Yes, take your medications, because I have a lot of people who've said to me through Instagram, I don't have any symptoms, should I stop taking my drugs? No, don't do that. So MS is a very silent, it's a silent disease. It's an invisible disease. And it's a very insidious disease. And what I mean by that is you is progressing whether you have symptoms or not. So when I had my scan and picked up the lesion, I didn't have any symptoms at that time, or there was disease activity going on. So don't stop taking your medications because you want to… because again, I get it, you know, you want to live a normal life, you've just been diagnosed, nobody wants to go from a totally healthy person to someone who's dependent on medication, and I was no different. But these medications will change the course of the disease. And they are so important. So get on a drug and stick to the drug.

Nick

Yeah, so for anyone who's kind of newly diagnosed, not experiencing some of those symptoms, make sure you're taking your meds.

Dr Daniel Madison

Yeah, I just think, I had the same thing because I had no symptoms at all, I honestly don't need this drug. And that's, you know, it doesn't work like that to stick on the road still on it. And it will make a world of difference. That the major thing is be open, be honest with yourself. That's the thing I wasn't. And I ended up depressed, I was living a lie. MS is nothing to be ashamed of. MS is something that is actually the most common neurological disease against amongst young adults. And it's not easy. So don't deal with it by yourself. Sorry, there's so many resources, there's so many people, and you can make the burden a lot easier on you by just talking to people

Nick

Amazing. Thank you so much. That was such good advice. And great to speak to you today. If anyone wanted to find you on social media to follow your journey, where could they find you?

Dr Daniel Madison

So my Instagram is the MS doctor, That's the.ms.Doctor. And if you've got any questions, please just fire them across in a message. And obviously nothing that you say I'm going to, you know, it's literally between us and I will just talk you know, I can't give any medical advice over that, obviously. But I'm someone to talk to who's experienced what you're going through. And if you just need to sound off to someone to speak to.

Nick

Amazing. Brilliant, thank you so much. And thank you for joining us today.

Dr Daniel Madison

Thank you very much for having me. Pleasure.

Helena

Now, if this was a commercial podcast, here's where there would be an advert. But as we're charity, we don't do that. So instead, we'd like to take this opportunity to tell you all about our own resources. 

Nick

So you can head over to our website, MS. Trust org.uk. And you can find lots of information about what we're chatting about in this podcast. So please do head to that website and click on MS information and support. There'll be a header there called ‘Worried you have MSA’ click through to that one for all of our resources.

Helena

Now we are back. I enjoyed listening to your chat with the MS. Doctor I follow him on Instagram. It was quite a different diagnosis story. I mean, we were saying about how long it could take for some people and he sort of just more or less got diagnosed without really searching for diagnosis?

Nick

Yeah, it's almost kind of accidentally by this by the sounds of things, just, you know that he was in that situation and was able to get that diagnosis, I appreciate that everyone listening to this probably won't have that similar diagnosis journey. And as you say, Helena, it could take a short period of time for some people we know, it can take a lot longer.

Helena

Yeah. And I think, you know, I've worked for the MS trust for a long time. And he is one of the few stories I've heard like that there has also been people who have had to go into hospital for one or another reason and had an MRI scan. And then they've noticed lesions in the brain at the time, and then sort of started investigating MS. And these were people who might not even have had very many symptoms. But I would say that's fairly rare. I think most people, it tends to take a little while. But I would like to say I think that since these 15 years of my diagnosis, I've also seen people getting diagnosed quicker. It's one of those conditions that sometimes it was sort of predominantly women in their, say 20s to 40s that were diagnosed. But I think with awareness raising and talking about the MS doesn't discriminate, it would be you know, different races, and not just necessarily women or older people or younger people children get diagnosed, that you know that if you are really worried about your symptoms, don't think just because you don't belong to that sort of bracket that you shouldn't be pushing to ask to be seen.

Nick

Yeah, definitely. It's easy to do that, isn't it? I think that's not something that I could have, you know, that's not something that I could have. But yeah, do, make sure you do get to see a health professional, if it is something that you're really really worrying about. 

Helena 

Now, we promised that we were going to get back on giving you some sort of ideas of how to go about doing this. And so one thing, which I think is really important is to prepare for your appointment when you're going to see, GP, as we've said several times, it's can be tricky to see the GP, the time is very limited. So to come prepared, is really important. So a good thing to do would be to do a symptom diary. So you can really make best use of your appointment that you have. So our website, this suggests that you note down what symptoms you're experiencing, and how long ago they started, how often and when they occur, and whether they come and go, or if they're more persistent. And some of these like weird, you know, sensations that you can have like pins and needles. I mean, some of it might last constantly others might come on when there's you know, different things might trigger them, or all that sort of information will help. In order to investigate the severity of the symptoms, this can be a simple scale, such as one for good days to five for bad days, have the symptoms affect your everyday activities? Like for instance, if you're experiencing fatigue, can you get on with your work and you find that school you know, it really impacting your your daily life. And anything that seemed to sort of triggers symptoms that make you feel worse or better. And back in the days, when they used to diagnose MS, they used to do something called the hot bath test. Because some MS symptoms can be made worse for not all people with MS. But quite a lot of people with MS. If they're hot. So they would put the person that they suspected had MS in a warm bath. And then sort of after they got out of the bath, they would know to see whether you know, things like fatigue, or were they stumbling more and things like that. They don't do that anymore. But for instance, heat could be such a trigger. It's also worth noting down other health conditions you might have, any medications that you're taking both prescribed and over the counter. And, as Nick talked about before medical conditions affecting other people of your family. So for instance, is there anybody in your family that has MS or other autoimmune conditions perhaps, as well or you know, any other conditions that potentially it could be instead of MS. So any kind of medical history will be useful.

Nick

If you're listening to this and thinking, oh my gosh, that's a lot of information to take to that appointment. Just collect what you can and make sure you take it with you but also have potentially a sort of a brief summary of your diary entries. So that could be just on a single sheet of paper, as a list or as a table. And then you could show that to the health professional as an overview and say, you know, on these days my fatigue was, was a four, it lasted for this many hours. And it stopped me doing, you know, my day to day activities, you could always, you know, jot it down on your phone as well. So you've got it handy. And then you don't have to worry about losing that piece of paper. But it's really important that you have that information listed and written down, so that when you get into the appointment, we all know what it's like, don't worry when we go to an appointment about our health, and often times we can forget something we can underplay things or overplay things sometimes. So just make sure you've got those records, and that it has all of that information that Helena has just mentioned about your whole overall picture of your health at that time. We did also promise some tips on how to deal with the uncertainty of this stage of your journey, that uncertainty of waiting for your appointment. And the uncertainty of waiting whilst the results come as well, to find out whether or not you have MS or something else.

Helena

And as we mentioned before, there's no tests that will be able to tell you straight away that you have MS. And you'll be most likely to see you'll see a range of health professionals and go for a lot of different tests. And some of these tests will not be for MS. But it will be to exclude other conditions. And this time, you know, that can be very challenging. And you know, I've heard a lot of people calling it Limbo land. But to understand how your journey to diagnosis is going, it might be actually quite helpful during this time, that can be quite stressful. So here are some tips. At the end of the appointment, find out what the next steps will be, and what further tests might be tried. If appointments are needed, can you ask as well, what when do you expect these to happen? And asked to be copied in on to letters between the consultants and your GP. I mean, they didn't have it back in the days when I was diagnosed. But like the NHS app, for instance, if you opt into that sort of thing, you quite often get to see the letters and things going in. And I find that can be quite useful. Not all services might not offer this, but you know if that's a possibility is worth asking. And if you don't understand something, ask the health professional to explain perhaps in a different way. Sometimes when we go to these type of appointments, you can feel really well a bit stupid, maybe because you don't understand some health professionals don't speak in a language that we always understand. Because they don't know there'll be most GPs are very good at this nowadays. But sometimes you come across these health professionals that speak like they're speaking to another health professionals rather than a patient and it can be quite tricky to to sort of follow along. So if you don't understand you are not, you are not stupid, you ask? Please ask because it's, it's not always easy to follow what they're talking about. And if you're unhappy with the way that the diagnosis is being handled, you can ask your GP to refer to different specialist for a second opinion. Although there's no legal right to assert the second opinion, requests are usually accepted.

Nick

Around this time, you might feel stressed or rundown, you might feel anxious or depressed from living with these unexplained symptoms. So if this is the case for you, make sure you also talk to your GP about whether or not you can be referred to a counsellor to help you find ways of living with this uncertainty.. its really important that you don't just suffer in silence. So please do make sure that you reach out for that help.

Helena

And that note, it's also important to remember that some of these symptoms can be treated before any diagnosis is confirmed. So talk to your GP, what can be done to help you manage the symptoms that you're experiencing now, and that's especially important if it's pain involved or anything like that.

Nick

If you do go through this process, and then actually the results come back and it isn't MS. What should you do next? This is often a question that that the MS trust gets on their inquiry service and on our helpline and is sometimes the question of watching and waiting to see how symptoms develop. As this can also help to distinguish MS from other possibilities. Or this can be really frustrating and we appreciate that it can also be worrying. But this is quite a common experience that lots of people go through around this pre-diagnosis or early-diagnosis experience. So if your health professionals are unable to give you a diagnosis at the moment, you should be able to agree a plan with them. So for example, you might agree that a follow up appointment takes place in six months, in a year, but with the option to get in contact with you sooner, if you have any significant new symptoms, or you become more severely affected. So it's your responsibility to keep pushing for a diagnosis. Keep going. But do that whilst acknowledging that this is not always straightforward. You know, it really isnt. And it can take time. And we know that and the MS community know that. So just keep going and keep prodding. keep finding out, what is the next steps for you and your health? Make sure you know which health professional to contact, make sure you know, who you're going to talk to, should your symptoms change? Or should you experience new symptoms, make sure you mentioned that in your appointment so that you know what your next steps are.

Helena

And I can just share a bit of my own diagnosis process that when I was starting to experience symptoms, I went for an MRI scan, and they noticed some lesions and they said that MS could be a possibility, but they had to wait and see. So it was very much the case of me just having to sort of schedule another appointment, I think they said that they wanted to do an MRI scan in six months’ time for me, and then see if anything happened. And then I had to do a symptom diary where I would note down anything that was going on in between. And there was other symptoms and things happening during that time. So when I came to my appointment, six months later, and I spoke to my neurologist, as could sort of say that you're actually I've been going numb in my hand. And this has been happening. And then the scan itself showed that there had been more disease activity, and therefore, I got the diagnosis pretty swiftly after that second consultation with a neurologist. So yeah, sometimes it annoyingly is a case of just waiting and see. But if you're listening to this, having gone through this whole process, and you did get an MS diagnosis, I would sort of say head to our website for the information directly dedicated for the newly diagnosed and also have a look out for our next podcast because that is going to be dealing with the topic of being newly diagnosed. 

Nick

if you do have any questions about MS. This would be before your diagnosis. After your diagnosis. Many years later, do contact our inquiry service or helpline. So we're available from Monday to Friday, apart from UK bank holidays, and that's between 9am to 5pm. Outside of these hours, you can of course still contact us but just leave us a message and we'll get back to you as soon as we can. If you wanted to call the helpline, the service is on the number 08000323839. Or you can drop us an email that's:  ask@MStrust.org.uk.

Helena

And you can also find us on Facebook, YouTube, Twitter and Instagram. I think we are also now on Tik Tok. And you can find this podcast on Spotify, Google and Apple podcasts and Amazon music. If you found this useful, then please share it with your friends and let them know about the MS Trust podcast. Give us a follow subscribe so you'll know when the next episode is out. And finally, we would like to say a big thank you to Anne Chapman audio for the music of this podcast. See you in the next one. Bye