Looking back: What an MS diagnosis meant 20 years ago and what it means today
Article from Autumn 2020 edition of Intouch Magazine

What was it like to be diagnosed with MS 20 years ago as opposed to more recently? Were people less optimistic then than they are now? Have changes in treatment and support options affected their outlook and quality of life? We spoke to three people with MS, diagnosed at different points over the last 20 years, about their experience with diagnosis, treatment and how they feel about their prognosis. Here’s what they had to say.

Mark, 57. MS Ambassador and Brenda Fisher, his wife and carer
Deanna, 30. Student and MS Ambassador
Danielle, 33. Public Servant


Trajectory of MS

When were you diagnosed? 

Mark: In April 1996. I was 33 years old.
Deanna: At the beginning of 2007, when I was 17 years old. 
Danielle: In February 2019, when I was 32 years old. 

What sort of MS do you have? 

Mark: I have progressive MS.
Deanna: I have relapsing-remitting MS, which is the most common form of MS. 
Danielle: My neurologist thinks it’s relapsing-remitting as I seem to follow the relapsing-remitting pattern.

What support was available to you at the time of your diagnosis? 

Brenda: There was nowhere to look for anything and all I remembered was the Readathon when I was a kid, so I thought of the MS Society. Mark was quite happy to keep going to work and just live our life, but I was the one who wanted a little bit more information about what may happen. We had three small children, what would we do? So, they were my first point of contact and they were fantastic, they came out to our house a week later. 
Deanna: I was not connected or aware of any support services back then. Receiving an MS diagnosis at such a young age and the lack of understanding around the diagnosis kept me floating down denial river for quite some time. 
Danielle: I really had not much of an idea so basically, I just started with a Google search. I was aware of MS, I didn’t know what it was, I just knew it was an autoimmune and central nervous disease. 

What support is available to you now? 

Brenda: There’s more understanding of what a family may go through. Mark retired from work three years after his diagnosis, his MS progressed quite quickly. You had to go through a phonebook to find who to ring. Now, the internet and social media and Facebook groups have made it a lot easier to access information within five minutes rather than waiting for someone to call me back in five days. 
Deanna: Today I use many services to improve my quality of life. Some of these include mental health plans and chronic disease management plans, funded assistance through the NDIS and fitness, educational or social services offered through MSL. I am also an MS Ambassador. I am looking forward to sharing my journey with audiences about the challenges of living with MS.
Danielle: I’ve been overwhelmed by the amount of help to drastically improve my quality of life that I’m discovering. I’ve been working with my occupational therapist to help set myself up to be at work as much as I can because I need a purpose, I know that about myself. 

How did your doctor describe your prognosis? 

Mark: Initially, the neurologist was very vague. She said, “I’m happy to call it MS” because she wasn’t totally sure. My GP was very good. He put his hand on my shoulder and said, “you’ve been diagnosed with MS, Mark.” We just left it at that. 
Deanna: My neurologist first showed me my MRI scan and pointed out the active lesions on my brain. He then explained the different types of MS and assured me the illness would not progress between relapses. He went on to say the prognosis for longevity is generally good and asked if I had any questions. At the time, I didn't ask many. Being 17 and diagnosed with an unexpected lifelong illness was quite a shock. Looking back, I wish I had sought the support of a neuropsychologist to help me better understand and accept my diagnosis.
Danielle: My GP said it looked like a demyelinating disease. The only demyelinating disease I knew of was MS so I asked her if she thought it was MS. She said “possibly, but you need to see a neurologist for confirmation.” And she wasn’t willing to comment any further. So I did a lot of research on my own. When I saw the neurologist, it was a little different. I thought, “aha! I’m not a crazy person, it’s not all in my head - there is something going on,” but then I also, and I still do, I have a lot of anger. Why wasn’t it picked up earlier? I could’ve had treatment that might’ve lessened the number of lesions that I have. I have an uncertain future because as you know, the longer you’re left untreated. I do worry about secondary progressive.

How do you currently feel about your prognosis? 

Mark: I’ve just gotten used to it. it is what it is. I’m in a motorised wheelchair now, I don’t drive anymore. I learnt at the time that it can be a real kick in the guts but there are positives, like being able to help people that are in a similar situation that I was 20 years ago.
Deanna: I feel positive. It is a challenge living with a chronic illness and I’m still learning and accessing services to improve my quality of life. I now know how to better manage my MS symptoms and where to reach out for support if I’m struggling. 
Danielle:  I actually feel pretty good about the future and I’m just basically working with my team, so I have exercise physiologists and personal trainers. It’s given me a good baseline of strength. I’m trying to get myself ready for just in case I do have a relapse. I’m optimistic about my future whereas before I thought, “oh geez, am I just going to be this exhausted and miserable my whole life?”

What advice would you give to a newly diagnosed person? 

Mark: Keep your eyes open, look for opportunity. There is always something else that you can do to make your life better. if you want to do something, talk to people, they will help you. I went on a V8 fast track around Calder Park. it’s all worthwhile. 
Deanna: Try not to panic. MS symptoms are unpredictable and there is a lot of uncertainty. Sometimes you feel locked into a medication because the alternative might be worse. All this can be scary. Talk to your neurologist or GP, contact MS Connect and register with MS Australia for education and support. Reach out to family and friends. Take care of your mental health. There are many services and people that can help you on your new journey. You are not alone.  
Danielle: Understand that there is support available, there are some really good online communities as well. You aren’t on your own. I think there’s every reason for optimism given the range of treatments and the research that’s being done. And just to persevere, even when things seem impossible. It’s so hard because everyone’s personality and life is different. I think it’s important to be optimistic and have a go. 

If you’d like to share your story, send us an email at intouch@ms.org.au.
 

 



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