I think I have MS – 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: The odds are that you probably don't have MS. Whilst MS is not a rare disease, it's not a terribly common disease either. In Australia we've got just over 33, 000 people who have MS. The prevalence of MS is increasing though. So, if you're thinking about this might be what is happening to you. At the moment, we want to give you all of the tools to get there faster and to do it well, and certainly preserving your mental health.

So, if we think about what the prevalence is, it's about 131 people per 100, 000 in Australia are diagnosed with MS. So, to put that into terms that you can understand, because those numbers are just so big, think of the MCG, our biggest sporting stadium in Australia. So, if you think about it, either when there was a Taylor Swift concert on or whether it's grand final day at the MCG, we can get 100, 000 people in there. If we were looking at numbers of people with MS, there'd only be 131. people in that stadium with MS. So, when you think about it like that, the odds are that you don't have MS. I just wanted to, to make that point up front but if you are thinking that this is you, let's get started. So, we're going to jump right in now.

So, if you're watching this today, you've got a suspicion that either you have MS yourself or someone that you love or care for might have MS. And that can be from a variety of reasons. And it could be that the symptoms seem to match what might be going on with you at that time. And I should point out that the symptoms of MS aren't always exclusive to MS. The symptoms have a huge variation depending on the area of the brain, optic nerve, or spinal cord that's affected. And that influences directly what sort of symptoms people will have in general. There's not one symptom that dictates that it's MS. There's not one test. And this can be worrying to people because there could be some symptoms that are from quite common disorders. The one that springs to mind is carpal tunnel syndrome, where people have tingling or pins and needles in their hands. So, there can be a variety of reasons for some of the symptoms. I should also point out too that sensory symptoms are particularly difficult because they're hard to describe and by sensory symptoms I mean things like numbness or tingling, pins and needles, a burning feeling and they're hard to describe because other people can't see them.

So, it's hard to get to the bottom of that and you certainly need an examination to really work that out. But there's other symptoms that are very common to MS, and they're things like extreme tiredness, which we call fatigue. There could be thinking and memory problems, there could be bladder issues, there could be problems with vision, blurry vision, double vision, not seeing colours in the same brightness.

And so, there's a huge variation, and no two people with MS have the same symptoms. So that's where it can get really tricky. You might know other people with MS at work, or socially, and you might be thinking oh, or having a chat to them and thinking well, that sort of feels the same. You might have a family member with MS, and you may have watched them go through a similar process as you, or they may have similar symptoms, and it might get you thinking that this might be happening.

It could also be that you've Googled your tingling hand and your pins and needles in your foot and Dr Google says that you might have MS. And we know that a lot of people go to Google and do searches for health information. That's very normal, it's very natural and in fact, in the top 10 searches on the internet for anything, including shopping, looking for health information is one of those.

Now we're going to look at the who's and why's and think about what we know about who develops MS. So, what we do know is that women are afflicted with MS at a rate of 3 to 1 greater than men. We also know that most people with MS are diagnosed between the ages of 20 and 40, although that is not exclusive. We do see children and teens with MS, and we do see people diagnosed with MS at an older age. We know that the closer that you live to the North and South Pole, the greater the incidence. And that's to do with sunlight and vitamin D. And we know that we do tend to see MS and other autoimmune diseases in families, but it's not a disease of a hereditary nature. It's by no means predictable that parents will pass down MS to their children and other family members.

What we do know about MS is there's what we call a genetic susceptibility. So, there's over 200 genes associated with MS. It's not one single gene and those effects are to various degrees. And so, we know that we sometimes see MS in families. So, the rate is slightly more than that MCG scenario I talked about before. If you have a parent or a child with MS, there is a slightly increased rate. It's not a lot. It's up to about 2, 000 out of those 100, 000 people. And we know from identical twin studies that there's only a one in four chance of the identical twin developing MS. So that tells us a lot.

We also know that there's environmental and lifestyle factors involved with the development of MS and that's obesity, particularly during childhood and teenage years, and also things like smoking. We know that smoking is not only important in the development of MS, but also the progression. We know that vitamin D is involved and we're still trying to work out at what level that's involved and exactly how it's involved. And that is to do with the vitamin D genes as well. And we know that there's very likely an infection involved in the development of MS. And at the moment, there's a lot of research in this area and it's pointing towards the fact that the Epstein Barr virus, which is the virus responsible for glandular fever, probably is most likely involved. And I think that's probably universally accepted now.

So, managing what comes next. So, you have the suspicion that you have MS. We've talked about the types of situations that we see MS developing. So, what happens next? The first thing I want to say, and I really saw this come through very strongly in the lived experience research I did during my thesis, is backing yourself. Most people have a really deep seated sense of what's normal for them and that something might be wrong. And I just want to tell you that you should back yourself and please trust your instincts. Don't put things off. Don't rely on the internet to tell you that this is or isn't. You need to search for the right answers but also ask the questions of the right people.

So, seeking help in the right places and who to see is critically important. We're going to spend a little bit more time on that. In a couple of slides when we talk about getting prepared for the GP and the neurologist, but your GP should be your first point of call. And that's for a lot of reasons. One, because we need the GP to check out exactly what's going on with you and possibly do an examination. But as I mentioned earlier, there's a lot of things that your symptoms could be that aren't MS, and your GP can work through those and work through that process of eliminating other disorders before that you're referred to a neurologist. And it's really important to make that a long consult. Don't make that a short consult. That's not fair to you and it's not fair to the GP either. You need time to work through all of the issues and it's good to be honest up front and just say to the GP, I think I might have MS, or I'm worried I might have MS and here are the reasons why. And I'm going to talk to you a little bit about how to prepare for that so that you can give the most information in the most effective way.

I want you before you seek that help to break it down a little bit, just to sit down and even if it's with a notebook or a paper or pen or on your phone or on your computer, start thinking about what your symptoms are and making a checklist of a symptom diary and perhaps even a timeline of when your symptoms occur. So, what's really good to do is think about each symptom, alone and try and come up with some describing words to give something around those sensory symptoms that we talked about before, whether it's a burning feeling, a tingling feeling, whether you might just feel weak, whether you might feel dizzy or off balance. Just write down all of the symptoms, even if you don't think that they're related. Because the thing about MS is that those symptoms as we mentioned earlier, varied and no two are the same. So, we also don't expect people to get all of the symptoms. I think when you do see that symptom list when you're doing your internet searching, it can be a little bit worrying and people think, oh, I've only got one or two of those, so this can't possibly be me. We would never expect anyone to have all of them of those symptoms and certainly not all at once. So being able to break down those symptoms and even things like vision issues can be really important, particularly on a timeline. So, if you had blurred vision or double vision for a few days and it was 12 months ago, that's really important to note to include that timeline around when your next symptom occurred. If it was something that was unexplained in particular. And what I want you to do during this period of time, and I've seen this time and time again in my research, is get some support during this time. And we'll talk about this again through the talk, but you need people around you who can support you through this. I don't want anyone going through this alone.

Getting up the courage to go to the GP in the first place can be a really big thing for some people. Having the courage to walk in the door and say, look, I'm going to I think this might be what's wrong, or I think that something's not right with me. Could you help me work out what it is so that we can get it better? Going through that without support really makes for an awful time, and we know that having support through that period can really change the way things turn out. So please ensure that you have that support around you, whether that's friends or family, or whether you go to an MS organisation such as MS Plus.

Who have an excellent nursing team on their MS Connect, that can answer questions for you and point you in the direction of the support that you might need through this period.

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.