Voiceover:

Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts. As well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers and advocates.

Phil O’Neil:

Hello, I’m Phil O’Neil. Thank you for joining us for the MS Australia Raw Nerve Podcast. And over the next two episodes of the podcast, we’ll catch up with neurologist Dr. Heidi Beadnall to find out the latest in MS research and in this episode to try and answer some of the questions you may have during your first visits to your neurologist. Hello, Heidi. Thank you for joining us.

Heidi Beadnall:

Happy to do it.

Phil O’Neil:

Could you tell us what it is you do here at the Mind Center and also I guess at the University of Sydney as well?

Heidi Beadnall:

Look, at the Brain and Mind Center, what I predominantly do is work as part of the RPA MS Clinic that’s based here. And of course also have the role, working as a neurologist with an interest in multiple sclerosis and neuroimmunology at RPA. And certainly here at the Brain and Mind Center, the University of Sydney, as well as some of the clinics, um, that I do here predominantly the MS clinic. We also do MS clinical trials. I’m involved with the group here and also other research into multiple sclerosis in particular.

Phil O’Neil:

Okay. And we’ll delve into that. We’re looking at almost exactly seven years, almost to the day that I first came and saw you in this office having been diagnosed with MS. And I remember how I felt that day because it was the day after I’d officially been diagnosed even though I had things leading up to that and my head was spinning. And I imagine a lot of people have this as well. A neurologist isn’t someone that you expect to see in your life, so you’ll end up in your office. And I imagine a lot of people don’t really know what questions to ask.

Heidi Beadnall:

Look, I think that’s very true. I think people are never filled with much joy seeing doctors in general and particularly don’t ever feel much joy in seeing neurologists. And I think certainly with a new diagnosis of a neurological condition or obviously we’re speaking more specifically about multiple sclerosis and central immunological conditions, it is all very overwhelming I think at the beginning in particular. And it’s a very, I think, common experience to be very overwhelmed, particularly in that first meeting.

Phil O’Neil:

And a lot of people don’t know what to expect. A lot of people, I imagine this is everybody that initially gets diagnosed immediately goes to the worst possible place. Do you find that initially you have to allay those fears or is it more important to just stick to the specifics?

Heidi Beadnall:

Look, I think it really probably comes down to the individual in terms of, I think often I take cues from them as to where they’re at. And certainly when I first meet people, sometimes they come to you with an inkling of what the diagnosis might be. Sometimes they have no inkling at all, they’ve just been asked to come along to this appointment. So I think first of all, I try and work out what they already know, what their expectations are. I think first of all I can only probably speak to the way I work, and I’m sure different people do it differently from a neurological perspective and people have their different styles.

But to answer your question more specifically, I think sometimes a lot of that initial consultation is trying to relay some concerns and some fears of preconceptions or misconceptions sometimes that people might have. Because I think with multiple sclerosis management in particular, there’s been a huge change in things over, particularly, the last two decades in terms of what’s available to people. And so subsequently that can really change how things evolve in terms of people’s experience with having multiple sclerosis. So I think that there is a lot often to take on board and I think, like you say, a lot of it is initially relaying some concerns that may be misplaced sometimes.

Phil O’Neil:

And then the worst thing is to do, I think, initially is to Google, but I’ll ask you about your opinions on that as well. But I think a lot of people would suddenly jump to the worst possible conclusion. But the thing about MS, as you well know, is there is no two similar cases. So it’s impossible for you, I imagine a lot of people look you in the eyes and go, “Tell me where I’m going to be in five years’ time.” And that must put you in a difficult situation because you know really, it’s an unknown, isn’t it?

Heidi Beadnall:

It is. I think there’s particular prognostic factors and things like that that we look for that can sometimes give us some idea. But like as you say, a lot of the studies and a lot of the information that we have are based on large groups of people. So in this clinical trial of however many hundreds of people, this is what happened, or in all of the thousands of people in Australia that have multiple sclerosis, this is what’s happened with them. But in terms of when you’ve got an individual person sitting in front of you and they say to me, “What exactly is going to happen to me?” Like you say, in that first instance when you meet them, that can be very difficult. And there are particular characteristics of different people’s disease that can sometimes help guide us as to whether or not we think someone might be more on the more mild spectrum or more on the severe spectrum or somewhere in the middle. But like you say, that’s not a 100% prediction. Like I often say to people, “I’d love to have a crystal ball, but I don’t.”

Phil O’Neil:

I imagine you say that a lot though. I imagine people, as I say, look at you in the eyes going, “Tell me everything’s going to be okay.” Which is a difficult situation for you to be in. But realistically it’s hard to know exactly what trajectory it will take. I think the education thing was really important for me. Initially I didn’t Google. I think that’s good initially because you’ll go down rabbit holes that’ll scare the hell out of you. Having said that, there are so many good news stories as well. What advice would you give to someone who’s been diagnosed and immediately they’re going to go home and try and find out everything they can?

Heidi Beadnall:

Look, I think the question of to Google or not to Google is a difficult question in general. And I think in terms of multiple sclerosis, there’s a lot on the internet, there’s a lot of new research coming out of all the time. There’s a lot of blogs, there’s a lot of chat groups. I must admit, I initially advise people to probably be cautious in the way that they Google, particularly until we’ve got a more clarified diagnosis because you can start to Google all kinds of things and like you say, go down rabbit holes. And I think that that really just adds to a lot of people’s anxiety and stress. And I do encourage people to be guided about the path that they’re following and try and say, “Look, you’re an individual, we’ve got to work on your case individually and go down that way.” Keeping in mind, I appreciate this, people are going to probably do some Googling. But I think that the problem with the internet in general and all that kind of thing is that your resource is only as good as who’s written it and where that’s coming from.

And so it can sometimes be very easy, and I’ve said that from areas that I sometimes Google, which I’m sure I’ve done the same thing where it’s not my area of expertise and I Google it and I go, “Is this something that I should really rely upon the evidence really closely or should I not?” And I think certainly when I watch shows on television, if it’s not my area of expertise, I can easily be drawn down the wrong path too. So I do initially probably say to people, “Look, be careful what you Google.” Or I sometimes actually give people specific websites. And I say, “Look, this is a good resource to use.” This is topical, but I often give people the MS Australia website, there’s another really good, some international MS societies that I give people the website for. That’s got some really good initial information for people.

So rather than say, “Don’t use the internet, don’t look at anything.” I say, “Look,” maybe direct them to some certain information that’s maybe more specific for them. But I do appreciate that a lot of people are going to Google. But it’s sometimes part of the journey, I suppose, of the patient and the physician and of course the wider allied health group as well, to go through these things. And if people do find things on the internet that concern them, to obviously address those issues. So sometimes I suppose it can help people work out what they want to ask, but sometimes I’d probably try and encourage people to maybe do that without going down Google rabbit holes.

Phil O’Neil:

Of course. But with an initial diagnosis, for a patient that’s coming to see you for the first time, what questions should they ask? What are the really important questions?

Heidi Beadnall:

Look, I suppose what I say to people initially, because sometimes, like I said, people come to you with a diagnosis or they may not even, they may not know even why they’re there. So I sometimes actually start by just saying, “What are you hoping to get from today? And what’s your understanding of where things are up to?” So that’s the question that I ask them. In terms of the questions that I want them to ask me, I suppose, is what’s concerning them and what they want to know. I just want to know what they want to really get out of the consultation. So I suppose that’s the main question I want to know from them. And if they say, “Look, doctor today I want a diagnosis and I want a management plan, and all this kind of thing.”

And I’ll probably say, “Look, I’m going to manage your expectations and today what we’ve got to try and do is initially try and make sure we’ve got the diagnosis right.” If it’s a little bit further along and you’re pretty sure of the diagnosis and it’s time to talk a bit about management, I’ll start to give people some resources to read about and start to talk about, “These are some potential management options.” So it depends a little bit on the individual and where they’re up to in their diagnostic and management journey. But I suppose I just want to hear from them what’s worrying them. Because the worst thing that can happen is that people leave your consultation room and they actually had one or two really big questions that they were really worried about that they didn’t ask and they leave feeling quite deflated and, “I wish I’d asked.”

Phil O’Neil:

So I guess in advance, find out what the questions are that you want to ask so that you don’t drive away and think, there’s 15 things there that I wish I’d asked.

Heidi Beadnall:

And I sometimes, and particularly in that initial consultation, when there’s a someone with a new diagnosis, I really do try and see them quite a few times early on. The reason for that is because often things crop up, like questions that they didn’t ask that are worrying them. I’m very grateful to have the help of a specialised MS nurse who often can help with answering additional questions that may have been missed or education about medications and management situations or symptomatic therapies. And like I said, I’d be very lost without her. So shout out to Anne Marie O’Connell. But I think that the MS nurses are worth their weight in gold in terms of all the help that they do to facilitate these kinds of things as well. Because early on it’s very overwhelming for a lot of people, maybe not everyone, but for a lot of people it is.

And I think that people need the opportunity to answer the questions, even if that may not be a question that I’ve necessarily think of asking, but it’s important that their questions are answered and that they feel like they at least know what they’re up for. Because like I say, sometimes it can be a question that I can very easily answer and they might just immediately feel much more relief. And if they didn’t have an opportunity to ask that, then they hold onto that for weeks and months while you’re sorting out diagnosis and management. And actually that could have been something that could have maybe been sorted out early on. So there’s nothing more intimidating, I suppose, when someone comes in with 50 questions to their initial neurology consult. But I think that if people have got the top couple of questions that they really want to get sorted out today, and then if there’s a lot more, I say, “That’s fine, if you’ve got a lot more questions.”

Because often as the medical person as well, looking at the picture in terms of we might need to start acting quite early and diagnose this quite quickly and get onto management. So you’ve got that agenda, which obviously of course in your mind in the individual’s best interest, but you might be on a slightly different page to sometimes the individual. So you’ve got to try and get on the same page. And I sometimes say to people, “You’ve got a lot more questions, we need to answer those.” But I say, “Today what I need to do as your medical person is I want to get this imaging organised, I need to get some more blood tests run. We need to do all that and we absolutely need to keep addressing your questions and we might need to do another consult to finish up on some of this.”

But if there are a lot of questions, I sometimes do take that where we say, “Let’s just keep progressing the diagnostic channels and let’s make sure we expedite your management and your workup. But at the same time we need to address your concerns as well.” But like I said, if there’s a lot that needs to be discussed, sometimes I do split that over a couple of consults if need be.

Phil O’Neil:

Well, a lot of people don’t realise that they’re actually starting a relationship with you as well, that this isn’t a one-off, that we’re not going to see you again, that you’ve got to have a relationship with your neurologist in order to go forward. With me initially, I thought, well that was lovely, I’ll probably never go again. And here am I seven years down the track, I’ve seen you at least a dozen times. People don’t expect that I guess. So it’s really important to find, I suppose, a neurologist that you connect with, that you realise it’s a long journey that you’re going to be spending with them.

Heidi Beadnall:

Look, I think that’s a really good point. And I think it’s also fair to say that look, not everyone hits it off with everyone and that’s vice versa. You’ve got to find a neurologist and a medical team of people that works for you as the patient too. And that doesn’t mean that necessarily the first person you see you necessarily are going to hit it off with. But at the same time, I suppose it’s important to try and facilitate your care in a way that things don’t get too delayed or anything like that. I suppose we’re lucky in certainly most parts of Australia where you probably do have options. Of course, there are some situations, maybe in more regional and rural areas, where obviously they’re not flushed with options or sometimes there’s no neurologists for many kilometers, thousands of kilometers.

So I appreciate maybe that’s a bit of a city centric thing to say, but I think it’s still important that you have a neurologist plus or minus medical team that you’re going to probably engage with more on the long-term for the reasons you’ve said. Because multiple sclerosis is a chronic disease, but it’s one that’s manageable and that we have got good therapies for in the great majority of people. And even when we don’t have disease modifying therapies that are particularly effective, we need to really work hard on symptomatic therapies and rehabilitation and maintaining physical health, mental health. So it’s a long-term journey, it’s not just a once-off in most cases.

Phil O’Neil:

I want to talk to you in the second part of this podcast about the advances in medication. But for this part, one of the first things you find out when you go to see your neurologist is you can be handed pamphlets with medication. Again, as a layman who had no idea what I was looking for, I saw the pamphlets and I thought, well, how do I choose the medication that’s going to work for me? As it turned out, the initial medication I had worked really well for me. But a lot of people would be looking at you going, “Well, can you choose for me?”

Heidi Beadnall:

And look, and I addressed that in a whole lot of different ways actually. Because like I said, once again, individuals have very different expectations and they want different things. And I think that certainly the way that I practice and I suppose colleagues that I’ve learned from is that there’s not just one medication for everyone in most scenarios. Occasionally that might well be the case, but we do have quite a few disease modifying therapies in the relapsing forms of MS to pick from. And look, certainly I think that giving people about 12 pamphlets and saying, “Oh, good luck, read these 12 pamphlets,” is not very helpful because that’s overwhelming. I also sometimes think that just saying to people, “This is the medication you’re going on, here’s the script, and good luck,” is also probably not the way either. So I try to take the approach of listening to people and what their needs are and learn a bit about what their lifestyle’s like.

There’s a lot of things you get from a consultation and talking to people that you can actually get cues as to what’s going to be right for this person. Another huge factor for me to consider as the neurologist is, where would I rate the severity of disease? How active are things at the moment? So that often would affect whether or not I pick a lower, a moderate or a high efficacy therapy. But at the same time, sometimes there’s different approaches that can be taken and that’s where you take a lot of cues from the patient. I think I target what options I give to the patient based on what I’ve heard from the patient and also from what I’ve taken from assessing all of the things like the MRI, the clinical history and all of that.

And sometimes I find that that means talking to people about the medication booklets that I’m giving them. And I sometimes give them, before I’ve got all the information, sometimes I’m still waiting on some blood tests and I say, “Look, we might have to have a bit more of discussion and dwindle this range of medications down based on what more information we get.” Sometimes people want to start having a bit of a read, but I always say, “Before we start you on anything, we’re going to answer all of your questions in detail and about the risks and the benefits of the particular medication that we select.” I think it’s very hard to do that for 12 medications, most scenarios I think I probably get it down to somewhere between two to five options. Some patients really want to read a bit more and really know what their options are and other people say, “Look, this is too overwhelming for me. I would like you to give me some pretty clear direction.”

Phil O’Neil:

I think it’s how I was with you as well. And I think my thing was needle phobia, I said, “Anything…” Which I imagine whittles down a lot of the options.

Heidi Beadnall:

Exactly. And so I would hear that and go, “Okay, well a medication being taken is better than a one not.” So we are going to maybe remove those options and then focus more on everything else. And some people say, “Look, I really need help deciding.”

Phil O’Neil:

That was with me, yeah, I said to you, “I’m overwhelmed, I don’t know what to do.” And we made a choice together. And I think that’s the thing that people should remember that you’re both on this journey in a lot of ways together.

Heidi Beadnall:

And actually though I feel it’s very important. Look, at the end of the day, it’s the patient that really ultimately decides what they take because it’s your decision. So I really feel like my role is giving all the information, educating as best I can about these are your options. One point I do make to people is sometimes the risks of medications and things like that can look quite scary when you start to read these booklets. But I always say to people, “You’ve always got to weigh that up against taking no medication. And there are risks associated with that as well.”

Phil O’Neil:

Yeah, of course.

Heidi Beadnall:

And in the individual patients, sometimes we don’t know. There are some occasions, particularly maybe with more mild disease that has the disease remained mild because we started therapy early and quickly and it was high efficacy? Or was it maybe never going to progress very quickly? And so there was always a potential percentage of people that we may treat that perhaps in hindsight if we’d never treated them, they would be no better or worse off than with the therapy. But the problem is you only know that in retrospect, and that’s why it’s tricky. And there are some cases that we certainly are very clear that if we don’t treat, we know there’s going to be problems.

Phil O’Neil:

And I guess it’s better to err on the safe side as well.

Heidi Beadnall:

Well look, I think so. And I think we’ve always got to take into account that the medications that we use in most circumstances are immunosuppressing, that’s associated with risk. So you’ve always got to weigh out what’s the risk and what’s the benefit? And that’s a constant discussion that we’re having with patients all the time. And certainly there comes to scenarios where sometimes there is discussions later down the track that’s coming off medication. And sometimes that’s again a risk-benefit decision, but that’s something we have less evidence on. We have a lot more information about educating people about commencement and these are the benefits, but we still actually need to learn a lot more about how long do we treat for and things like that.

Phil O’Neil:

Well, it’s a never-ending journey. In part two of this podcast, we’ll talk about the advances in technology and how that’s helping as well. Thank you so much, Heidi.

Heidi Beadnall:

No problems at all.

Phil O’Neil:

And in the next episode of the MS Australia Raw Nerve Podcast, Dr. Heidi Beadnall will tell us about the latest with MS research.

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