I think I have MS, what now? – with MS Nurse Dr Therese Burke AM

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

Therese: I just want to mention some intricacies in MS and by intricacies I mean things that are sort of a bit unique to MS. We do see them in some other things but really in MS these are things that I want you to consider that might help with acceptance along the journey and might help you along the right path.

And the first is watch and wait. Remember that I said one of the critical things for an MS diagnosis was that the multiples, multiple lesions in multiple locations at multiple times. Some people only have one episode or when we look at their MRI, there's only evidence of one episode, not of multiple episodes. And so we do what we call watch and wait and that's where we can't diagnose with MS even though we have a huge suspicion and we're just going to watch you very carefully and see what develops and hopefully if there is another episode we pick that up super quick and we can get treatment organized as soon as possible. The reason I mention this is because if you are in this group it's critically important that you do do the follow up. You have the follow up MRIs, you have the follow up appointments with your neurologist or MS clinic or GP, and you don't get lost to follow up because that can happen. And as I mentioned right at the top of the show, we really want to get people diagnosed and onto treatment as soon as possible.

So please, if I can give you some advice, it's that watch and wait is a real thing. It's not a lazy option. It is a real thing. And your part of that is to do all the follow up appointments, have your tests, and stay in touch. And particularly if there's a new symptom that you get in touch really quickly so that things can move faster.

The second thing is I know that there's some obstacles to diagnosis. So whilst we've given you the tools of what to look for, there are things that are going to get in the way and that could be living in a rural town and not having the access to GPs that people in cities have. It could be access to a neurologist. We know in Australia neurologists certainly don't grow on trees and they are hard to see, but there are pathways that we can use and your MS organisations in each state such as MS Plus can be an excellent source of information to get access to MS clinics and to specialist neurologists who specialise in MS in particular and they can give you the addresses and names of people who can help.

It's also important to note that if you are in a rural, regional or remote area that it really might be worth travelling to one of the metropolitan places to go through the process of diagnosis. It doesn't mean that you have to have all of your treatment there. These days in particular they work very well with local health authorities and local health clinics for treatment options in the future. But certainly in that diagnostic period, that could be a really important thing to think about, that you might have to go further afield. Jodi mentioned the outset about surplus suffering, and this is the extra burden put on people with diseases, and in this case, we're talking about MS. In addition to the physical, emotional and psychological effects of the disease itself. And I saw this hugely in my years working clinically as Jodi did and it certainly came through loud and clear in my research. And often we saw this from communities, we saw it from families, and we saw it from healthcare professionals, which made me incredibly sad, but once I became aware of it and we started talking about the possibilities and recognizing surplus suffering for what it is that's the way we start to heal it.

And the way that this showed up in MS was for a lot of people in this pre diagnostic period where they felt like they went to get help for symptoms, but they were brushed off. That was by far one of the greatest examples of surplus suffering I saw. So I just want to come back to that point of self advocacy during this period, to if you see one person and you're told, I don't believe you, or no, that's nothing to worry about, but you honestly feel like it is, that you either go back to that person again, because that can be important, just re presentation can help, or you get a second opinion and you see somebody else. We don't want you to go through that alone. And also remembering that you do have those sources of support from MS Plus and other service organisations throughout Australia that specialise in MS.

I also just want to touch on MS brain health, particularly if we're in these two first ones, the watch and wait period, or the or there's some obstacles to you seeing the right people for diagnosis and you might have a wait. I want you to be thinking about practicing brain health, whether this is MS or not. We may as well get a head start on things. And in the resources I've listed the website for MS brain health that you can look at. And these are guidelines to help you with all the lifestyle factors that you can control and you can do to ensure your MS brain health. And they're things like looking at sleep hygiene, looking at diet, managing weight, exercise, managing stress and the list goes on. But there are lots of things that you can do there and I want you to be thinking about that and actively participating and engaging in MS brain health during any waiting time times that you have.

Now using the internet for health information. As I mentioned before, I do not want you searching on the internet and self diagnosing yourself. That's an absolute hard no. There can be lots of things go wrong with that, you can underestimate or overestimate your symptoms and not be seeing the right people. So, please go to your GP in the first instance. We know that there's dangers with that too, because there are other disorders that mimic MS or look like MS, but have very different treatment regimes. So we want to catch that early and we want to get you to the right person.

So how do you optimize your health information and resources? As I mentioned at the outset, we know you're going to be going to the internet for health information and it can be an excellent source of information gathering and helping you to more deeply understand things along the way. And that can be tests that you have, it can be seeking support from support groups as you go through the diagnostic process. It can be just understanding things and just getting deeper into something so that if you understand it more, you're more likely to cooperate and to follow through with tests and follow up appointments. So that's where it can be really handy.

But how do you do this in a really safe and effective way? There's no foolproof method for doing it. But there are some general guidelines. So firstly, looking at who's responsible for the content. And obviously we want to be looking at MS experts in the field, clinicians, scientists and neurologists. We want to be looking at information from organisations that specialise in MS and have the latest up to date information. Places like MS Australia, MS Plus, MSWA, MS SA and NT and there's various international sites as well which we'll have listed in the resources where you can go to for information. What you're looking for is information that's very clear and that you know who's responsible for the content. It should be very clear who the author is, there shouldn't be any anonymous content on it. We're also looking for sites that are regularly updated and have a really clear date on them so that you know the information is the latest and reflects the latest research. We don't want to be seeing sponsors and advertising for pills and supplements and things like that, particularly in this arena. And we want to know that the information is consistent. So people will often look at an Australian website, but then they might look at one of the UK or US websites national MS Society websites just to make sure that the information is the same and sometimes seeing the same information presented in a different way might just work better for you. So they're the sorts of things that you're looking for for good resources and also knowing that they can be incredibly helpful especially in that period after diagnosis and looking for support.

Okay, so just to summarise my takeaway messages from today. I want you to trust your instincts. If you think that something's wrong, it possibly could be, and you want to get that checked out as soon as possible.

I want you to use the online health information responsibly. I don't want you to be self diagnosing, but what I do want you to be doing to be doing is using that information to trigger what happens next for you and getting to your GP. I want you to resist the temptation to self diagnose and leave it alone and not worry about it. I want you to get it checked out in any case.

I want you to be using the internet to gather information and support not just after diagnosis but in that period during and in the lead up to diagnosis where it's critically important to have the support of others. And I want you to appoint people to do that for you, whether that's people you trust in your family or your friends, or whether you go to a service organization like MS Plus, you'll have an excellent MS Connect helpline where they can give you the support and point you in the right direction of trustworthy resources as you go through this period.

And I also want you to be focusing on MS Brain Health, whether or not this is or isn't MS, it's still a really important thing to do, particularly during waiting times where you're looking to get more information.

So I know that there's a lot that we've given to you today. We've talked about a lot of things, we've talked about some difficult things, and we've talked about some challenging things. But at the end of the day on World MS Day, our goal is to get diagnosis early and it's to get diagnosis right so that we can get people onto the most effective medications that we can. And we're so fortunate in Australia that we have access to medications in a way that the rest of the world doesn't have. So we want to be able to use that so we can keep people as well and functioning as possible. for their entire lives. So thank you for tuning in and best of luck on your journey. Thank you.

Jodi: We're here for you before you get the diagnosis as well too. So we have lots of different services that are here available on the screen. You can listen to our podcasts, the MS Boost, the general podcasts or plenty of webinars on our resource hub. And if you have any questions please don't hesitate always to call the fantastic keyworker team at Plus Connect on 1800 042 138.