Everything you need to know about multiple sclerosis

Early treatment of multiple sclerosis is crucial to ensure best outcomes, but diagnosis can sometimes be a long road. Here’s what to look out for.

More than 33,300 Australians live with the chronic neurological disease multiple sclerosis (MS).

Among them, Canberra-based management consultant Laura Birchall, who was diagnosed in 2020.

“After I exercised, my arms and my legs would be tingly, my vision would go really dark and I just thought it was because I was really bad at cardio,” the 31-year-old recalls.

“When I was in the shower, I couldn’t feel my legs and thought I need(ed) to stop having such hot showers; I had bouts of fatigue.”

Alarming data prepared by the Menzies Institute published in 2023 found MS is increasing at an accelerating rate — up by 30 per cent in the four years to 2021, and more than doubling from the previous period.

And a new report released today by MS Australia, on World MS Day, shows while time to diagnosis is dropping, the average time from onset of symptoms to diagnosis is still too high, at an average of four years.

“In MS, time is brain; we know the longer it takes to get a diagnosis of MS, the greater the risk of damage occurring,” MS Australia head of research Dr Julia Morahan says.

“The report shows that for too many people that’s still a long, long process.”

What exactly is multiple sclerosis?

Often diagnosed between the ages of 20 and 40, and affecting three times more women than men, MS occurs when the body’s immune system mistakenly attacks the fatty substance — called myelin — surrounding nerves.

It can lead to difficulties walking, loss of hand and arm function, problems with speech and swallowing, loss of sensation, pain, vision changes and slowed thinking.

“There’s no known single cause of MS, it’s a complex disease but genetic, environmental and behavioural factors can all play a part,” Dr Morahan explains.

She says having a close relative with MS or another autoimmune disease, having previously had Epstein-Barr virus (the virus that causes glandular fever), being low in vitamin D, and smoking are risk factors.

What are the symptoms of MS?

Multiple sclerosis has many symptoms, which can be varied and unpredictable.

“These can appear at any time and in any order, and can come and go or change in severity over time — everyone’s journey is different,” Dr Morahan says.

Common symptoms include:

• Muscle cramps and stiffness
• Weakness
• Loss of coordination and balance
• Trouble with talking and swallowing
• Vision problems, including blind spots and changes in how colours look
• Tiredness and vertigo
• Unusual sensations such as pins and needles and sensitivity to heat
• Bladder and bowel issues
• Problems with sexual function
• Changes in memory, concentration or thinking
• Depression and anxiety

How is MS diagnosed and treated?

Hollywood stars Selma Blair and Christina Applegate and Aussie comedian Tim Ferguson are among those who have talked publicly about living with the autoimmune condition.

While there is no known cure for MS, there are a range of therapies available in Australia, most of which are covered by the Pharmaceutical Benefits Scheme (PBS).

The first step, Dr Morahan says, is to see your GP, who will refer you to a neurologist.

A combination of tests can be used for diagnosis, including an MRI of your brain and spinal cord to detect damage.

“With early intervention a lot can be done, so push for tests, push to see a neurologist, because there are a lot of great medications now, a lot of very effective treatments,” she says.

“Many people with MS live active and fulfilling lives, so don’t sweep any symptoms you may be experiencing, even if they come and go, under the carpet.”

Laura says she was lucky to have a GP who recognised a version of MS she couldn’t see.

“I think if something feels a little bit off, if there’s been a change, if something doesn’t feel right, talk to people in your life about it and listen to them when they tell you to go to the doctor,” she says.

MS Australia CEO Rohan Greenland agrees: “We can’t stop or reverse the damage that’s done but we can significantly slow progression, so it’s very important that people with MS get diagnosed quickly and they get access to these very effective disease modifying therapies.”

For more information or to find support, visit MS Australia.

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Written by Liz McGrath.