MS: Busting the Myths
Multiple Sclerosis is one of the most common yet unknown neurological conditions in New Zealand. Let’s see how much you know about MS! Hopefully we will teach you something new today and don’t forget to share what you have learnt with a friend, family member or colleague to help other change their perception of MS.
FALSE – Approximately 5000 people are diagnosed with MS in New Zealand this means approximately 1 in 1000 New Zealanders are diagnosed with MS. MS is one of the most disabling conditions in young adults. MS is a chronic, life-long condition however as new treatments and ways of managing the condition are being researched and developed people are living longer with MS so there will be more people living with MS as we head into the future. Read more about the incidence of MS here.
FALSE – In NZ the average time it takes between first symptoms and diagnosis is 7.5 years. This can be for a number of issues, lack of understanding about MS and its symptoms, symptoms without brain lesions and difficulties accessing diagnostic services. Neurologists will run a number of tests in order to make a diagnosis of MS and discount other conditions which may present with similar symptoms. Living without a diagnosis and explanation is a very difficult and often distressing period for many people. Read more about how MS is diagnosed here.
FALSE – People are usually diagnosed between the ages of 20 and 50. In New Zealand the average age of diagnosis 37.8 years old. That being said you can be diagnosed younger or older. It is not uncommon for teenagers to be diagnosed with MS. Read more about what MS is here.
UNCONFIRMED – What we know is that MS is an autoimmune disease where a person’s immune system attacks the myelin, fatty protein that protects the nerves in the central nervous system. The reason why this happens though is still unknown and research is taking place all over the world to understand why. It is thought that it may be environmental factors that make certain people more susceptible. For Vitamin D specifically there is a significant body of evidence to support the suggestion that Vitamin D deficiency plays a role in MS however no clinical trials have yet been completed to show the exact role, benefits or optimal dosage. Read more about some of the research taking place here.
FALSE – MS has many symptoms which are unseen including:
Read more about the symptoms of MS here.
FALSE – 80-90% of people with MS experience fatigue, one of the most common and unseen symptoms of MS. Fatigue is not just tiredness it is an overwhelming exhaustion that makes even small tasks impossible. Imagine waking up, having a shower and then having to go back to bed because the fatigue is so overwhelming. The cause of fatigue is still not known. Fatigue is one of the most misunderstood symptoms and people find it very difficult to describe or make people understand what they experience. Many people leave paid employment early in their careers due to fatigue however simple adaptions such as a more supportive chair, or an extra half hour lunch break can make a huge difference. Read more about fatigue here.
FALSE – Many people are able to successfully manage their condition with a positive attitude, changes to their diet and lifestyle, regular exercise and the support of family, friends and friendly MS organisations across the country. Disease modifying treatments (DMTs) are only available in New Zealand for those with one type of MS, relapsing remitting and under certain criteria. Read more about other ways of managing MS here.
FALSE – Genetics do increase chances slightly by 2-3%. The risk of an identical twin of someone with MS is 1 in 4. There is no way of testing at the moment whether or not family members of a person with MS will be diagnosed. Read more about the causes of MS here.
FALSE – There is absolutely no evidence to suggest that MS is contagious. This is one of the most baseless and damaging myths surrounding MS. Read more about some of the concerns that people with MS face here.
FALSE – No two people with MS experience the same symptoms or have the same journey with MS. This makes understanding MS all the more difficult and isolating. Sharing experiences, research, information support services and peer to peer groups are invaluable in helping people understand their condition and showing them they are not alone. Read inspiring tips for living with MS here.
HOPEFULLY SOON – While the cure hasn’t been found yet we hope it won’t be far away! New research is taking place all the time and new treatments, diets, management programmes all help minimise the effects of the condition. Read more about current research taking place in NZ here.
As you can see many of the preconceived ideas about MS are false and part of our role at MSNZ is to help educate and change people’s views about the condition. We hope you have learnt something new here today and please watch some of our videos so that the people living with MS can tell you exactly what their lives with MS are like. Please consider also making a donation to help us continue to raise awareness and the understanding of MS as a chronic condition affecting thousands of people in New Zealand and advocating for improved access to treatments, services and support to help improve their lives and wellbeing. Make a difference and make a donation today! THANK YOU