Nick 0:10
Hello there, I'm Nick.
Helena 0:11
And I'm Helena. And we both work at the MS Trust, a charity for people affected by MS in the UK, we are here to help you make sense of MS.
Nick 0:20
Thanks so much for listening today to our podcast breaking it down, where we talk all things MS: how MS affects people, how MS might impact your day to day life, how to live with symptoms, and how to live the best that you can do with MS. And today we're going to be talking a little bit about how to make the most out of your appointment with your neurologist.
Helena 0:47
Yes, appointment with your MS team, or your neurologist, as we're talking about today, gives you an opportunity to ask questions, to discuss treatment options, to help you manage your MS. And the time that's available is usually quite limited. So this information provides some suggestions on how to make you (sort of) the most of your appointments and get the best out of your MS Team. Which will also sort of include an MS nurse which we will be coming to in a future podcast as well.
Nick 1:18
And not to sugarcoat things at all Helena, because we know how difficult it is, I mean, tend to be the challenges that the NHS faces at the moment in time. You know, we know we hear from people who live with MS that they're really struggling to get an appointment. You know, they can't see their neurologist at the moment, they're on a huge waiting list of, you know, months or even up to a year. So we know that you know, if you're not diagnosed with MS at this stage, or you kind of, you think that you might have MS. And you're waiting to get that first appointment? We know that you're not the only one in that position.
Helena 1:57
Yeah, so we decided that we wanted to do this episode, because we get a lot of questions about preparing to see a neurologist. What kind of questions you should ask them and how to best spend that very limited time that you get with them.
Nick 2:12
Yeah, and it's almost like, you know, kind of something to help you emotionally as well for that time. You know, your heads like to be swimming with lots of different questions, so many sort of, unknown factors that you'd want to discuss. So you know, it's to give you a bit more of a strategy and structure so that actually when you do get to that appointment. You know, instead of feeling overwhelmed with all of that information, actually, it can give you a bit more of a structured way to approach it. And we did also want to hear from a neurologists, from that side, as well so that people can find out what the best thing to do is when they're waiting for their appointment as well. Because we know that that can be a really difficult time too.
Helena 3:04
Yeah, and waiting can be so hard. And especially if you're not yet diagnosed or you feel like something's wrong, there might be a new symptom that has occurred, or, you know, you might be waiting to find out some results for some test. I know I had an MRI scan last November last year, and I had to wait several months before I got the results of the, of that scan. So I don't know, I'm very impatient. I'm an impatient patient! So I, I really struggled to get on with life when you have some medical appointments to wait for, it can be really tricky to sort of, you know, not just constantly think about what is going on? What's happening? What am I waiting for?
Nick 3:42
Absolutely, absolutely. So many people are in that position aren’t they Helena. So we thought the, you know, a great person to talk to you about this one would be one of our MS trust ambassadors and friend of the podcast. So we reached out to Dr. Agne Straukiene, he’s a neurologist in the south of Devon. And so we went over, you know, lots of different aspects of the preparation, what to do in the meeting, what notes to take with you, maybe who you can take with you as well. So without any further ado, let's jump into the interview.
Helena 4:18
Yeah, Let's have a listen.
Nick 4:21
I'm joined by Dr. Agne Straukiene. How's it going today, Agne?
Agne 4:27
Yeah, very good. Today's the first day after heavy raining it's sunshine in Torquay. So I'm so so excited, I’m going to go and do some of outdoors. Maybe do some tennis, play some tennis you know, get that sunshine getting into my skin and body and prevent me from all these viruses around. That is like peak time for COVID and flu type symptoms that are overwhelming our health systems is I noticed. So I want to do something good to my body, to prevent from developing any flu type, fever symptom in autumn, living in Britain.
Nick 5:03
That sounds good to me. I can imagine you’re a tennis wiz, so you'd be much better than I would be! If I can get it over the net, I'm quite happy. But for anyone who's not familiar with your stuff I know you've done lots of work with us before and lots of work with other MS organisations as well. But would you be able to introduce yourself?
Agne 5:27
Yeah, I'm a neurologist. I'm committed to a career in neurology with a special interest in multiple sclerosis. I became a consultant in 2016. I'm MS Cerebus lead, in Torbay and South Devon at NHS Foundation Trust. I'm also a senior lecturer at the University of Plymouth. I am very much into healthy living, and healthy lifestyle for people living with MS, or any other autoimmune condition. As I noticed there is a very huge interest and lack of understanding and knowledge, and education in this, in this area. I'm also very innovative and developing various different tools that helping to improve MS services and also improve patient's outcomes. I'm also a researcher, I'm doing a lot of research. Running various different clinical trials as (PI) principal investigator and also I am a (CI) Chief Investigator of a few clinical trials: focus on patients outcomes, improvement quality of life, communication, connection, using digital technology to assess people's motor function at the patient's home, such as using augmented reality. I have pioneered setting healthy lifestyle MS clinics at Torbay hospital. And as a team, we were awarded by Brain Health Award in 2022, which we are very proud of. I'm also a founder and a host of ‘Be Well with MS’ podcast. So I'm very pleased to be here today, Nick and talking about such an important topic. How to get prepared for the clinical consultations for people with MS.
Nick 7:14
Amazing wow, there's so much that you do, isn't there. And it's amazing just hearing all the different strands to your bow there. So yeah, amazing. And thank you so much for joining us. So today, we're gonna talk about how to get the best out of your neurologist appointments. And we know we're not going to dive too much into the situation that we see the NHS in at the moment, we know that there are lots of people struggling to get to see their neurologist or you know, waiting for extended periods of time. So we're not going to dive into that aspect of waiting for appointments and etc. But when you do get to see your neurologist, what would you say Agne, is the best things that you can do. So you can, you can get the very best out of that appointment.
Agne 8:00
To make the most of your appointment with their neurologists, it's essential to be well prepared. And here are some tips I would like to share with you. It's very important from a neurology perspective, or neurologists or nurse perspective, sitting in a clinic and waiting to see you is if you could compile a medical history of yours. Write down things that had happened in your life and, and obviously the health related, any medical history is super important. Previous diagnosis, symptoms, medication and treatments. And if you could timeline these events, you know, maybe in 2004 this happened, in 2006 this what had happened. We quite often go down the timeline, but it's important to save the clinical consultation time if you're prepared, you know exactly. You don't need to sort of go back and sort of, take your time to think you, you just spot on, you get throughout the data and events in your life. And it's so easy then for the consultant to understand the nature, the trajectory of the condition that you're living with. It's only going to enhance our making decision processes towards your diagnostics and further management. Also keep a symptom diary, it's important to document what symptoms, how frequently, what triggers the symptoms. What's the pattern? What alleviates those symptoms, just provide that valuable information to your neurologist, also get your questions listed, write down a list of questions or concerns you have about your condition. This could ensure that you don't forget anything during the appointment, because appointment is almost like standing on the stage. You're under a lot of stress at the same time because it's not nice, nobody likes to come to the hospital nobody wants to talk to the doctors and nurses, it's almost like it can affect your, your memory. You become a bit muddled, a bit foggy in your mind because you just stress the, you know, effects your, your, your memory of the events in the past, and what's going on day to day, it's super important and, and maybe bringing a person with you like, you know, a family member, a friend, anybody that could accompany your your appointment and, and take notes and also offer you emotional support. There's nothing more beautiful than seeing patients and coming with their good mates and friends, and soulmates and spouses and wives and husbands. And you know, sometimes the emotions can be on board and we, we sort of sometimes by accident or without intentions, when we bring out these emotions, the tears comes the the sadness comes, you know, because you sort of almost going through the your timeline and you're remembering things that brings a lot of feelings, you know, and emotions at the same time. So nothing is more beautiful when the spouse or your friend is holding your hand, whilst you're going through that tough topic. So I think that's important, then that person that is next to you could take some notes as well, that you could then renumerate, and sort of delve again into the the subject that you discuss with a neurologist and, and be always open and honest. We're not embarrassed to listen about your gut function, or bladder function or sexual problems that you've got. We are so, I have to say, we're so numb to the you know, feelings and emotions that may be attached to somebody else that, you know, it has nothing to do with, uh, you know, looking after other people and health, you know, we are looking at you as a biological unit. And we're trying to see how all these functions and organs works together, is there a disconnect between the brain and the bladder, between the bowel and the bladder, between the heart and brain between the stomach and the brain? So if you hide, if you're not open, you're never gonna get a decent help or plan that will improve your symptoms, improve your quality of life. And had some patients coming and say, “Oh, I haven't mentioned that, because it's so embarrassing”. No, forget about this, we are here to support, we are in the room of you know, the door is closed, the windows are closed, nobody's gonna listen. And when we finish our clinics, we forget about the things that we discussed, to be honest, because we all have our own lives. We just go and live our lives without, you know, thinking what, what did you say? So be open, transparent, honest. And that's the way to get some help. And it's important to discuss the treatment options. And you know, if it is a symptom management, if it is a relapse management, if it is a disease modifying therapy management, having that discussion, in the clinic. It's super important and make that in your notebook that that's the area and subject that you need to tackle whether with a neurologist or MS specialist nurse.
Nick 12:58
Wow, it's so much, so much information there, it's amazing. So you know, from sort of, making sure you bring someone with you maybe, to take notes and for emotional support, and really having that preparation prior to going so you've got your, you know, your medical history, your questions, the journey, the timeline. And I was just thinking, like know, when you were sort of talking about the preparation. Does that help you from a neurologist side to sort of, for you to make sure that you're giving the best to your, you know, your people who are coming to see you?
Agne 13:34
Yeah, absolutely. You know, as a neurologist, it really is important to have this structured, segmented plan in your clinics. Because there are so many aspects that we need to cover in 15, maybe 30 minutes. Depends which service are you representing as neurologist, and you know, talking about life and getting involuntary emotional impact on your healthy living. It's not the way that would lead us to making decent, clever, smart, adequate life improving, life changing, game changing management plan. It's important to stick to the, to the structure. We actually developing some sort of package for newcomers, to our service and for people with established diagnose. What is expectation from us healthcare providers to the patient? What do they need to do for us? You know, there are other unique challenges for individual service, and you may also collaborate with your own team, and find out what is the expectation from you as a patient, for this particular service because some, some services are doing some questionnaires prior to the clinic. Some people are asked to do certain assessment, like nine hole peg test, like timed seven metre walking tests, before they you know, reach the clinic. So you have to work on the individual basis and talk to your health care providers and see, what do they want. Because is all gonna, is the end product is, is you being well, with the management that we set in place. And we can only do that, if we have a structure during the clinical consultation, that's super important. There are so many apps available where you could track your symptoms, record them, write their questions, you know, get ready. There is a your MS questionnaire.com, that one of the pharmaceutical companies developed a questionnaire, to get you ready for the, for the consultation. Again, that , that lists the symptoms, evaluates the symptoms and gives you the, the sort of feedback after you've done the questionnaire. So, so many tools around, you need to talk to a health care provider and find out more because it only enhances our clinicians performance at our work, because you, you're going to help us. So we're heading into, sort of self management collaboration, working together in a partnership, and how can we achieve this, this beautiful connection, you as a patient and me as a healthcare provider?
Nick 16:06
Wow, it's really interesting hearing about some of the sort of different tools that are available. Because, you know, if you're kind of new to seeing a neurologist, and you think, Oh, you have that feeling of oh, my goodness, I don't know what to ask, I don't even know where to start, you know. Potentially feeling a little bit worried and anxious, or maybe embarrassed to talk about some of those functions, like you're saying Agne, like that, you know, bladder and bowel or, or sexual function. So actually, it's really cool to hear that there's places that you can go to, that sort of almost give you that structure of things that you can talk about things that you might want to consider asking about.
Agne 16:43
Yes, absolutely.
Nick 16:47
If someone was coming to you for the first time, or coming to see any neurologists for the first time, is there anything that they could expect?
Agne 16:56
So the clinical consultation, for new diagnose patients, newbies, coming to MS service. Just expect a thorough medical history review. So any homework that you're going to do before coming, is going to bring a lot of value into the clinic, because you're going to go down this timeline and, and neurologist will be assessing and asking questions about your history, medical history. Then expect a physical neurological examination which involves looking at your face expression, how you move your face, whether you have a symmetry, symmetry droopy eyelids, droopy nasal labial folds. Where the arms are, you know, are you able to lift your arms up and down what the strength you've got, what the balance coordination, neurologists is unique that holds the tender hammer that taps your reflexes, checks of pathological reflexes by scratching your foot, your sole, and doing various different manoeuvres which may feel a bit odd. But it's like a little dance or game that you're getting involved, under the instructions by neurologists that are going to conduct this neurological assessment. You will have a chance to discuss your symptoms, your concerns, also possible requests for diagnostics which involves maybe repeating MRI scan, maybe adding MRI spinal cord if you just had an MRI brain head only. A lumbar puncture, you know looking at the biological markers these days, we look at the oligoclonal bands, neurofilaments IGG, index, kappa light chain marker, biological marker. Evoked potentials, which is a conduction study looking at how the signalling is coming, how speedy the signalling is coming to your eyes. optic nerves our upper limbs and lower limbs. And some sort of, we call this MS mimic blood tests, that we look at the other potential alternative diagnosis that could potentially mimic multiple sclerosis and that involves an MO spectrum disorder, mock associated disease, vasculitis, syphilis, HIV. We look at the vitamin deficiencies, we look at the EBV virus status, whether you have, you have active infection or previous infection, CMV virus, various different things we check as a panel at the very beginning at the start as part of the initial diagnostics for multiple sclerosis. And also there will be some initial discussions around how can we best modify your disease, your immune system, how can we prevent you from not having multiple relapses and new formed lesions, and how can we slow down the progression of this disease. And also the current practice, which has changed in the last decade or so, we address the lifestyle and, and we do recommend some lifestyle issues or approach to living much healthier to preserve the brain health. And everything is just the aim to understand your condition, your the way you're going to work with, with a consultant, how you're going to, together make informed decisions towards your treatment plans. How can we tailor the advice to your unique life, and your personality, your identity, your lifestyle. It's super important that we have this collaborate connection. And we sort of understand who you are, what do you do in your life, what's your adherence is going to be to our management plan, are you prepare to have all these investigations and treatments. So, so we try to be empathetic, and we try to be passionate. What we do, we try to listen, we try to do our best job we can as a neurologist, but you have to take into account that we are human beings, sometimes we have huge issues within this service, we have huge issues with being understaffed, we have huge issues at home, maybe there are people who are ill at home, and sometimes our attention could be occupied. So we have to sort of admit that we, we all are human beings, and we have good days and bad days, even if your experience was maybe not the best one at the very beginning, give us, give a bit of time to the neurologist and maybe arrange another meeting and have another discussion, you will, you will find that common language over the time, just be patient be kind, and we will be kind to you too.
Nick 21:43
Wow, that's really interesting to think about that side of things as well. And to try and build that relationship with the neurologist, and the person who lives with MS as well. Early on, and, and then hopefully, you know, you'll move forwards in the best way possible for that person. So yeah, that's, that's amazing. Again, if someone's listening to this, and they think, right, okay. I’ve got a neurologist appointment coming up, whether they're newly diagnosed, or whether they're a little bit further along in their MS journey. And they think, okay, right, I've prepared, you know, getting my prep done writing a list of questions. Is there anything that you know, maybe someone might write down that actually wouldn't be appropriate for a neurologist to answer there, if you get any kind of common questions that come up that you think actually, I'm not best placed to kind of talk about this in clinic?
Agne 22:33
Well, neurologists are experts in the central nervous system and conditions like multiple sclerosis, and also other central nervous system, autoimmune conditions that affects and cause white matter lesions. But there are certain questions that neurologists can't answer for definitive, definitive. For example, they can't predict the exact core, so tragectory of your condition, and provide the guarantee about the effectiveness of the specific treatments sometimes, you know, it could be a trial and error of, of managing your symptoms. And we have to go down there, maybe a five different medicine, before we establish one that actually works for your symptoms, it's difficult to know what side effects you're going to develop. Also, we we can predict to a certain degree, if, for example, we have patient coming with predominantly spinal cord lesions, young age, male gender, and presented with a very severe relapse at the very beginning and has got biological markers quite nicely raised, which would indicate that, you know, somebody's having a very active, demyelinating process. We could guarantee that this person probably, in the long run is going to have even more episodes, more severe episodes, and, and there's going to be a cumulative effect on the brain health, in a format of the plaques and lesions, you know, we can't specifically, you know, define for some milder cases what's what's the nature, is going to be sometimes, people present with a mild symptoms, but then they have severe episodes. And there is an element of the ageing process, immunosenescence of the immune system. So, again, it's an emerging research area that we're trying to understand how the, the ageing process effects or whether disease modifying therapies are still effective in the older population. And also what the implications are of the lifestyling, and adequate lifestyle tools, that we would recommend for people whether they is going to modify sufficiently, is sufficiently. Or it needs to be a combination of the factors that you know lifestyle, high potency, disease modifying therapies, proper symptom management, every journey is unique. And and, we wish we had the crystal balls, that we could look and prognosis your future. I think a lot of anxiety from the patients comes from, you know, lack of predictability, you know, but you don't need to live life with MS and expect that something horrible is going to happen to you. Because it's, it's not a clever way of living this life. If we're addressing the, you know, the anxiety that may happen living with this condition, but knowing how to manage that inadequate way, whether it's coming, like from mindfulness, being mindful, not dwelling too much on the future, because it's impossible. I don't know what's going to happen to me, like, maybe I will be hit by the car, you know, so you can't live life in sort of wait for something horrible to happen. Bear in mind that 95%, that you have these horrific stories in your mind, they’re never gonna happen anyway. You know, so it's our mind that sometimes produce these worries, unnecessary and just, you know, if that happens to you just say thank you to your brains. Then say thank you for reminding of the, of the events that may potentially occur in my life, but may not, and just move, on focus on what's in front of you, what do you do, what's, what's around you what the sounds you hear, what smells and everything. Just bring that attention to the present moment without worrying too much. And, and neurologists, you know, should be doing the same thing to be honest, because, you know, it may feel like when you come to the clinic, that it's your problem, it's your diseases, you, it's everything. No, when the patient hits my clinic, and I always transparently and openly say to my patient, look, this become my problem, too, because I need to understand you. I need to understand your biology, the nature of the condition, the prognosification, if possible, using all these biomarkers, and MRI scans, and including gender ageing, and everything else I could so far, it becomes my problem. So we share that problem. So you don't need to feel like this is just you, your problem. I am coming here to help you. And shared worries, it's lighter, than just having that on your own shoulders.
Nick 27:10
Yeah, I love that it's, you know, sort of turning it round. So that actually, it's a problem that you can face together, and someone else on your side, isn't it? Who can, who can go on that journey with you. That's, that's really nice to hear. And we've sort of, you know, we touched upon, waiting lists are very long at the moment within the NHS. Where might people be able to go to with, you know, if they've got burning questions, and actually, they've got a long way to wait until the next neurologist appointment. Is there anywhere that you would recommend sort of going to, to just kind of alleviate some of those worries to get some answers?
Agne 27:46
I suggest that you reach out to your primary care physician, or general practitioner with questions and concerns. I know and I know, I can hear your voices. Now listeners, I'm with you. I know how difficult and challenging it is to contact your primary care physician. You know, you may not have an immediate answer, is like, but you can book an appointment in two weeks time to see your GP,is still possible. Although I know how primary care feels, you know, they do feel overwhelmed, they have so many patients to deal with. And if you live with a chronic condition, you know, sort of you can wait in a way that's how the primary care physicians look at you. Because there are some oncology patients, and my patients coming through the door, you know, and they might need immediate answers and help. But you know, living with MS, you have a bit of time, two weeks, three weeks, four weeks, you can wait. But again, you could prepare in a similar manner, with your GP, bear in mind that they have even shorter period of time to listen to you. So you need to be very clever, and make sure that you have at least one question that is so most, or two questions that most important that you could ask your primary care physician. Join online support groups and forums, depends on your locality. You know, sometimes the healthcare systems, well not sometimes, always they are different depends where you are, which country are you representing. If we look at the, the USA and NHS complete two different, so we're comparing apple versus orange, you know, different system, different, different approach, different structure, and different time line as well. But, you know, make sure that you, if you're linking and linking to the support groups online, make sure that they are within the same country, but as UK so you, you know, try to reach people who lives in UK and and they are under the same NHS system. If you're in the USA, reach out to people and support groups that live in the USA, and they are exposed and they have, they face the same system. So shared experience and advice is super important sometimes, you know, little question, you know, some few questions that could you, could get immediate response if you go online. Also contact your MS organisations, whether it's MS trust MS Society, MS Together, so many other organisations that are around, make sure that they maybe are local. And there are some foundations for relevant information and resources, that you could get immediately in the format of their leaflets, booklets, online resources. Also, maybe if it's too long, you can't get through, you've been waiting for a year or two, maybe consider seeking a second opinion. In particular, if you're very, very concerned about about your health, don't, don't go quiet and assume that you will be heared, you know, it doesn't happen these days. So you really want to make that sound and noise. It's, it's sometimes it feels like being in the war, like, you know, if you're quiet, you know, not necessarily you get that attention immediately, you know, and the priority goes into somebody who shouts a lot, but be kind at the same time, don't don't overwhelm us as clinicians if possible, because I'm coming with an open heart to you, I'm here to help you. But if you if you start, you know, making a lot of noise and every single thing that you, you're not certain and you can't get some answers from your forum, online supporters, primary care, that's the time to come to me as a specialist, but you know, just divide that information, and seeking information approach in into numerous amount of the support and resource that you're, you can access. But yeah, so let's be kind to you, to our to each other, basically, if we want to, to get immediate attention or medical input. And if it is that bad, if you really struggling and you can't lift your legs and something is dramatic stroke like, type presentation, you know, we have emergency services. We have acute medical units, that is in between the, the hospital and the ED, you know, so out of out of hours, Devon doctors, you know, that they are here to support everyone, depending on your, what was going on, you know, but be mindful, be reasonable. If you're not sure, ask other people, you know, how are they doing? What would be their advice? How could you best approach their clinicians, let's work together, you know, the current environment is challenging for both clinicians and patients. We are coming as insiders of the health systems that we are feeling. We're, we're burned and overwhelmed, and everything is just too much, you see. So yeah, so finding that sort of right balance. But if you're in crisis, if you're, if you're not passing urine, if you're not moving legs, if if you can't get the shower access, to the shower, because you're not able to mobilise these are crises, you know. These are immediate attention requiring approaches that so you could always contact your, your, I'm sure you have contacts of your MS nurses, even if they are not responding within 72 hours, they will do in five days time, I'm sure. But crises like that requires acute medicine input. Because usually the services the way we run them, they are not acute services to provide catheterization, if the blood is not functioning for example, or do some immediate scanning, you know, it takes a bit of time with the way we set up is for more sort of chronic input rather than acute medicine input. So be mindful if you're not sure. Talk to people, to talk to friends, you know, sometimes, you know you have that blind spot that you don't see yourself ,what's going on with you. So, you know, get some sort of other people input into your care and their advice, what you should do best to improve your, your quality of life and symptoms.
Nick 33:55
Yeah, I think that's so important, isn't it, to talk to other people and to get you know, another opinion, I think that was a very realistic approach to the situation that we're that we're in now know it, you know, we, we can't wave a magic wand at this stage. And we wish that things were different. But there is support out there. So, that's, that's really good to see. For people. We know that your podcast is all about living as well as possible when you live with MS. But while people are kind of waiting for their next neurologist appointment, is there anything that you'd recommend in terms of health? How can someone stay as healthy as possible in between their next appointment with the neurologist?
Agne 34:37
Yep, so I'm pretty sure people who's got metabolic problems, obesity, overweight, diabetes, high blood pressure, they already had some recommendations from physicians, primary care physicians. So follow those recommendations that already you received, as part of living with other comorbidities. And now on the top of the, of that there is a diagnosis of potential diagnosis of MS. Okay, so, so listen to what you were already told. In the meantime, maintain balanced diet that is fresh, organic, seasonal. Avoid any process, ultra processed foods and what are they? So they usually are very colourful, very tasty, very salty, very sugary, and things that you just put in the microwave or oven and in 5 minutes or 10 minutes time, you got your meal. These are processed foods right so, so try to avoid anything that is home cooked, you start from the scratch or maybe you buy some recipe boxes, then you sort of chop yourself and and prepare that, nourishing your body, rich off nutrition. Food is amazing, what you could achieve in the meantime, also make sure that you're well hydrated, you should drink two to three litres. If your kidney function is good a day of still water, try to avoid all those sugar energy drinks, fizzy drinks, that is not nice on your stomach anyway. So make sure that you are you're having still mineral water, you know, spring water, anything like that is going to is going to make your function, body function a bit better, because our body consists of 60% of the water inside us. And so all these cells are lacking of the fluid and the water, to maintain or improve their function. So that's super important. Engaging in regular exercise activity, whether it's in a format of the walking, jogging, going to gym, swimming, playing golf, playing tennis, dancing, anything is suitable for your condition,and you like it and you're going to maintain it, for sustainability, it brings you a lot of joy just stick with that. If you haven't done this before, try to go for a walk, long walk or maybe a short walk to start with, if you haven't got that physical fitness, which you you can build up and it's, it has got a lot of preventative and neuroplasticity effect that means that it forms new network in the brain and the function that you you lost, you may regain over the time. It's evidence based, it's never too late. And to manage stress, you can try some relaxation techniques, make sure that you have a space, a room or a place a corner in your room where you find that sort of, you know, present moment, maybe a light music, maybe you can light the candle you know, use some aromatherapy and, and listen to the meditation tracks. It could come in a format of the people with MS podcasts or Headspace, or Calm app provides you similar approach to being that present in that moment, without dwelling too much on the past and the future. And finding that sort of resilience and better coping strategies. That's an amazing technique to learn to be honest. It doesn't feel okay when you start with, you build up that stamina over the time and, and also if you’re already prescribed a medicine for your symptoms, continue that, don't stop because you know, you will worsen the situation. If the GP doctor, already decided to manage your pains and aches, that's how you should pursue and if the mental health is an issue, seek some counselling. There are some self referral services we've got one like ‘Talk Works’, for example in Devon that you can self refer and various different other services that you can get access from psychologists, and get some counselling again, you can access that by a GP Doctor. Therapy, psychotherapy, is super important in particular, if you suffer with depression, anxiety and PTSD type symptoms and mental health illness so. And stay positive stay, stay hopeful. Advances, advancements in the MS Research continue to offer new treatment options are possible. We have on the, on the radar under the radar, so many different approaches in this life. And everything obviously takes some time, but it's coming and we will be able to offer you more and more solutions and and, and try to improve and help and, and maintain your function with the therapies that we have available and new therapists on the horizon to come.
Nick 39:27
Yes, that's really good listening to you there. But when I do listen to you about healthy lifestyles, I think oh yeah, I should be doing that. Oh, yeah, I need to start doing something. I need to build in some of those things into my routine in terms of diet and exercise. But yeah, it's really good to sort of see the holistic approach, that that you take towards health and, and how to, you know, live as well as, as, as you can in your situation. So for someone, maybe they've, they've sort of dropped off in terms of seeing their neurologists, so maybe they haven't been for a few years could be for lots of different reasons, mental health, changes in location, that kind of thing. Should they try to get an appointment again with someone, would you say?
Agne 40:14
Of course, I think it's, it's important to get that support from the healthcare providers. I know that there are some people in progressive stage of MS that, you know, they've been discharged many, many years ago and, and they just plod around. You know that, they don't get any input from their, from the health care providers. So I think it's super important to educate yourself about available treatments. These days, we have Siponimod, for example, for secondary progressive MS. We have so many different options for relapsing remitting multiple sclerosis, and we have also focused on symptom optimization. So it's super, it's super important, to get engaged with, with a health care provider because you will really benefit from it. I know it's waiting time, it's hard to get in. But once youre into this system, you get a lot of support and help.
Nick 41:15
Amazing Yeah, and I was curious earlier on, you kind of mentioned MRI scans, you know, particularly when, when people are going through that newly diagnosed experience. Recently, we had a clip on our social media, and it was of a person who lives with MS. And they were sort of talking about their annual MRI scans that they have. Is that something that everybody who lives with MS, should everybody be having an annual MRI scan?
Agne 41:44
When we talk about the diagnostics, each diagnostic tool has to have a reason why we are doing things for people. It has, we have to rationalise each request. So there are some cases in MS, that whether they have an MRI scan or they don't, we wouldn't, it wouldn't change our management. And I addressed this probably, and Organ. Very advanced MS Diseases, that if the current, in the current environment and the policies that we've got in place, we are monitored. And we follow the NHS England recommendation and algorithms these days, we are probably not being able to prescribe high potency, or any disease modifying therapy who are bedridden at the moment, in there within the current NHS situation. And the funding schemes that we have as a prescribers. So the rest of people who are fully mobile, who live with progressive or relapsing MS, and I'm not going to subtype that I'm just talking broadly, progressing or relapsing, because progressive MS can still have relapses. And the relapsing form can still have progression. At the end of the day, we are dealing with one disease. But these people who are still up and about they do live life, maybe they still work, maybe they may still function at the high level, or lower level doesn't matter. All people have a potential to be better, and have a protection and preventative therapy in place. So this is my, maybe own view, but I do scan most of my people that come to my clinics, because I see the potential in every single person. And I want to give that life if possible, or at least maintain the life that they have, at this time moment.
Nick 44:00
We've mentioned earlier Agne, about disease modifying treatments. Do you know you, sort of, for you and your practices? Is there a perfect time, a good time to start that conversation about DMTs?
Agne 44:14
I'll share my own experience when people are newly diagnosed, it's overwhelming experience, and a lot of information to take in. So we broadly speak about what is MS, and what to expect within six months and what investigations are to follow and stuff. But we do bring people, a few weeks later to have a decent, detailed discussion about the disease modifying therapy and we do that relatively in a short period of time after the diagnosis. We talk about weeks, because they need to understand the evidence of the disease activity, the evidence of the potential treatments around to reduce that activity. And it's important to have this open honest conversation with neurologists about the benefit, risks and timing of the DMT, is also adherence monitoring. And, and this decision is usually done in a manner of the personalised way. Because it needs to match your lifestyle, your, your, your beliefs. Whether this medicine is going to work or not, your adherence, how often you're going to administrate this drug and, and potential side effects. It's an individual choice, individual condition, it requires an individual approach and attention.
Nick 45:32
Amazing, thank you so much. And we're nearly out of time with you today Agne. Just, just finally, is there anything that you, you know, you'd like to say to everyone who lives with me? Is there anything that you would advise them to try and do.
Agne 45:46
So I would suggest that you have to advocate for yourself in your health care journey, you have to become a champion patient, who is equipped with knowledge information, latest MS research what the treatments are around, maintain a strong support from your friends, family forums, online people who are already living with MS and are on medicine or maybe not on medicine, and how they navigate through. And prioritise your self care, including physical, mental well being, and consider participation in the clinical trials to contribute MS research. Because without that, we wouldn't know how to best approach and how to develop treatments that are really groundbreaking and, and improving people's lives. And also reach out to MS organisations for resources and support such as MS Trust. Maybe MS Society depends on your locality and, and how you get the best response from these organisations, and the team that works tirelessly and enormously to support the community with MS. And remember that MS affects each person differently. So individualised personalised care and lifestyle choices are crucial.
Nick 47:09
Amazing, thank you. So I just like to say a huge thank you to you, because there's so much information and so great advice throughout, the throughout this chat. So I've learned a lot as well. So thank you so much. I was just going to say is there sort of anywhere? If people want to hear more from you, from your podcast from your online content? Where's, where's best to find you?
Agne 47:31
First of all, thank you so much for having me, it was a great pleasure, as always Nick, talking to you about the best approach to living with a chronic condition such as multiple sclerosis, and you can find me on the media platforms, but more condensed and structured way of getting my podcasts available and listen to the various different episodes, that I cover, various different topics with different experts in this in this area in MS field. It's www.bewellwith ms.com. Thank you very much.
Nick 48:04
Amazing, we'll make sure we link to that in the show notes as well. So thank you so much.
Helena 48:10
If this was a commercial podcast, here is where there would be an advert, but as we are charity and you know this by now we don't do that. So instead we'd like to take this opportunity to tell you all about our fantastic resources for people with MS.
Nick 48:25
Yeah, really good place to start if you're not not too sure where to look is our website. So that's MStrust.org.uk. And on there, you'll find lots of different resources from all aspects of life with MS. Of course, we've got lots of information about the topic of this podcast, which is how to make the most out of your appointments. And so if you head to our search bar and you type in appointments, you'll be able to see lots of different articles, blogs on how to prepare yourself for that appointment. So again, that you've got that that nice structured approach when you get in there and you have something to fall back on if you start to feel really overwhelmed, you got that structure to go back to. And so whether or not you know, you're you're talking to someone in person or online, you'll know a little bit about what to expect when you go to those appointments. And we'll also link to these, these notes in the show notes below as well.
Helena 49:28
Yep, back all this information from Agne I mean. Agne’s always fantastic she's, she's so good at talking through all these different scenarios, and then ideas I love, especially the ideas on how to keep well while you're still waiting for the appointment and also how to prepare for it. I got an upcoming appointment actually, for the first time I'm going to see my neuro since you know, long before the pandemic because everything else has been virtual or it was sort of just over the phone. I don't know about you, but I'm like really bad to prepare for meetings that are on the phone, I don't know, because you always feel a bit stressed. And, and quite often, when you have phone consultations, they tend to be sort of, oh, we'll call between this time and that time, so you can't just sit down and sort of wait for the, for the appointment. So I think once I took my, my yearly neurologist appointment when I was out in the middle of Tesco or somewhere, and you know, it's not, it's not ideal. So I'm quite, actually looking forward to going in prepared to, for a meeting this next month. So I'm trying to sort of really take the opportunity to write down any questions that I have. So I do have a proper list to bring along. But I have in the past kind of also brought along my husband to appointments, which are one of those things that Agne was talking about, a bit like moral support, but also to remind me of anything that I might have forgotten. But also, I guess it's important for partners, because they might have questions as well. Have you gone along to many of your work partners? appointments Nick?
Nick 51:06
I have actually Helena, and yes, it was interesting, the first time that, you know, kind of went with, with my partner, I wasn't quite sure what I was best to do. So, you know, I was thinking I don't know about MS. And actually, but it was just important to be there for her. And, but then also kind of after going to a few, we find it quite helpful, you know, be hearing some of that information can feel really overwhelming. For you know, particularly for the person who's, who's there living with MS. You know, it's going to be a lot, a lot of, you know, emotions and stress potentially, and the unknown, the unpredictability, and also just terms sometimes that we're not familiar with, and without being health professionals. So actually, it quite helps in, in our relationship if I can go along. And then we can just kind of chat afterwards because it you know, if you're hearing some of that information, and actually, you might struggle to take it all in, if you're in a heightened, emotional place at that time, and actually just having that person who, you know, can talk about, oh, actually, they said this thing and actually use this term and like, let's go and look up this strategy that they suggested, to actually kind of… what’s the word that I'm looking for? Like, debrief. So yeah, it's actually quite helpful to, to just to have that information, debrief at the end of the session, together and what the next step should be.
Helena 52:45
And I think actually, that is a really important question that we quite often think when we, the information people that work at the MS trust get asked, how should I prepare? They always like to, to include that question like, what's the next step? So you know, should I be starting on a new treatment? What do you want me? Am I being referred somewhere else? What's going on? What, what should I concentrate on next? What's, what should I do? And I think yes, if you have, bring someone along to your appointment, and of course, that doesn't need to be a partner, there could be a friend or a parent or, or even a child, you know, that it's. But actually sit down afterwards and have some sort of action plan, is a great way of doing it. I think, quite often we, you know, hear about people who wish they would have asked the question that they might not bear to ask, or they'd been a bit embarrassed about. I know, Claire, from our information team, when we did a podcast a while ago, she was saying that question that people ask when they're just opening the door, and they're leaving their appointment? And just that last question. And sometimes that can be like, the most important question of those sessions. So I think, to really just sit down, make the questions. And then don't be embarrassed, just, you know, everything down there. And then when you're at the point that other things might pop up, and you might think of other things, but just don't forget about the questions that you have already on the paper. Because lest we know, those appointments are quite short. So therefore, it's really important to actually get those kind of questions that you really prioritise, trying to get an answer from you know, then and there in the appointment. So it's a lot to think about and I think it is really useful if you do have a person with you to sort of help you with that, and take notes or you know, you could ask if it's okay to record for instance, you could just put down your your, your your phone, perhaps. And, and do a voice recording, but just double check with the neurologist if they, they're okay with it, just in case you, you know, struggle to take notes or remembering, things because I know that like, quite often can come out of a meeting and go oh, what was that? What happened in there?
Nick 54:52
Yeah, absolutely. Yeah. Someone else to just sit there and just write some stuff down. I think that actually there's so much value in that as well, you know, doesn't have to be your partner, your spouse, you know. Anyone can, can come with you to sort of take on that support role as well. So, yes, definitely really important, and as Agne was saying in terms of the sort of questions that might be a little bit more sensitive. You know, they are health professionals who deal with this stuff all day long, you know, you don't have to feel embarrassed in that situation, they will have heard your question probably hundreds of times, right. And they're not judging you. They're there to support you. And that's, that's what they're there for.
Helena 55:35
Yeah, they will have yeah, like you say, they will have heard it, or they will have heard something that's even in your ear, it might be even stranger or weirder or more. You know, horrible. What have you, they'll have heard it before, this is what they, what they do for a living. So yeah, I just, just ask. If you don't ask, you won't find. We hope that you found this episode useful. But we do want to remind you that if you do have any questions about them as in or if you're struggling to see your MS Health Professional, the MS trust is here for you as well. And we're happy to try and find answers to any questions you have. Now we're not medically trained professionals, that's important to point out. But we will try to, you know, the people that are working in our inquiry line, they are very, very good at trying to find out any answers or sign points, pointing you to the, to the right people who would know these things. So do get in touch with us. If you do have any questions while you're waiting for an appointment.
Nick 56:32
Yeah and you can access our helpline team, so that's between Monday to Friday apart from UK bank holidays, and the times that you can reach them is between 9am to 5pm. Outside of these hours, you can also leave us a message and we'll get back to you since we can. So you can go ahead and call that number on 08000323839. If you'd rather not talk to someone over the phone I know sometimes it's, it's more appropriate to get in contact via email. So you can reach the helpline team via ask@MStrust.org.uk. Or you can also contact us on social media as well.
Helena 57:20
And on social media, you can find us on Facebook, YouTube, X, Instagram, Tik Tok, and Threads. And you can find this podcast on Spotify, Google and Apple podcast and Amazon music and other places where you would normally listen to your podcast. And we would love it if you gave us a review. We have seen some reviews already, and they've been very nice. So it would be lovely to hear what you think of the podcast? Have you got questions that you would think we should be asking health professionals or topics that you would like to see covered? Or maybe just let us know how you're getting on with seeing your MS Team? Let us know. And I guess now I will go and prepare for my appointment with my neurologist and write down all these things that Agne’s been talking about. And we'll see you in the next episode. Bye.
Nick 58:15
Bye then.
