MS isn’t something that’s always visible, it’s a condition with symptoms that are not always seen. World MS day is held on the 30th of May every year. The My Invisible MS campaign is about raising awareness of the invisible symptoms of MS and looks at the unseen impact that MS has on the lives of people with the condition.
There are more than 100,000 people in the UK with MS, most of them discovering that they have the disease in their thirties, forties or fifties. It affects three times more women than men and researchers are still working to understand why this is the case.
What is MS?
Multiple sclerosis (MS) is a condition that affects the brain and spinal cord. The coating (myelin) that protects your nerves is damaged and this affects balance, motor skills, speech and coordination. MS is a condition that stays with you for life. A cure has yet to be discovered.
Most people with MS have what’s called relapsing MS, which means that they experience symptoms for a period of time and then relapse or go into remission, where they display no symptoms, before the disease strikes again.
Others have what’s called progressive MS, where there are no periods of remission and the condition gradually gets worse over time. Progressive MS can either be:
- primary progressive; affects 10 to 15% of all people with MS. The condition begins with mild symptoms that gradually get worse over time.
- or secondary progressive; this comes after relapsing MS. The condition gets worse steadily over time. However, thanks to disease-modifying therapies, fewer people now go on to have secondary progressive MS.
A simple explanation of MS
We all have that substance called myelin that protects our nerve fibres in our central nervous system. Myelin helps messages or synapses to travel quickly and effectively between our brain and the rest of our body. In people with MS, the immune system sees myelin as a foreign body and attacks it, much like the body destroying the cells in the pancreas of a person with type 1 diabetes. When the body attacks the myelin, it damages it, leaving scars called plaques. The damage causes messages from the brain to the rest of the body to become distorted, broken and slow, or not to be sent at all.
In addition to damage to the myelin, damage can occur to the nerve fibres too, which causes increased disability over time.
What are the symptoms of MS?
The symptoms of MS are not the same for everyone and depend on the part of the central nervous system that has been affected. MS can affect balance, walking, talking, vision and how you feel about yourself.
Some common symptoms include:
- Loss of balance
- Speech problems
- Coordination problems
- Vision problems
- Difficulty swallowing
- Pain
- Pins and needles
- Muscle spasms
- Fatigue
- Bowel problems
While wobbling when you walk and speech impediments are evident to everyone, the fatigue, bowel trouble and muscle stiffness are invisible symptoms that can cause a lot of distress and frustration for anyone with MS.
What causes MS?
Nobody knows for sure why people get MS. It’s thought to be a mixture of genes, environmental factors and lifestyle factors.
Genes and MS
Genes play a role in MS, but no single gene will definitely cause a person to develop MS. However, certain genes do make people more susceptible. 110 different genes have been linked to MS, many of which have also been linked to other autoimmune diseases like rheumatoid arthritis and Crohn’s. For MS to develop, however, environmental factors have to be present to trigger the disease.
In other words, MS is not directly inherited from parent to child. If your mother or father has MS, there’s only a 1.5% chance that you will inherit the disease, which means that only one in 67 children have a chance of inheriting the condition.
Environmental factors and MS
Vitamin D and MS
Interestingly, MS is less common in tropical countries, nearer to the equator that receive more sunshine and vitamin D. Independent of ethnicity, MS is more prevalent in people that live in countries like the UK, Canada, the US, Scandinavia and New Zealand (i.e. countries that receive less sunlight).
In 2015 scientists demonstrated that those who are genetically prone to low vitamin D levels are at a greater risk of developing MS.
Low levels of vitamin D, in particular before adulthood could be a causal factor for developing MS. Research shows that a lack of vitamin D in early childhood increases the risk. A Swedish study in 2015 found a link between MS and low exposure to the sun during childhood/teenage years.
Viruses and MS
There’s evidence that some viruses can trigger MS. One common virus is the Epstein Barr virus that causes glandular fever. This isn’t to say that anyone who gets glandular fever will develop MS, infections alone, just like genes are not the whole picture.
Body mass index and MS
A study in 2016 shows the link between BMI and MS. The higher a person’s BMI, the greater the risk of developing the condition.
What can help people with MS?
Although there is no cure yet, those with MS can do certain things to manage their symptoms or slow the progression of the disease. Medication can be taken to reduce fatigue and relax muscles. Relieving stress and plenty of rest are also beneficial.
Some people with MS look to alternative medicine and use medicinal cannabis or CBD oil to ease their symptoms. In November 2018, the UK government legalised cannabis for medicinal use in the UK, so it can be prescribed by specialist doctors to help with muscle spasms, stiffness and pain.
Taking vitamin D supplements may have some benefit. In 2016 the UK government recommended that everyone take vitamin D supplements for bone health (10 micrograms/400 IU) every day. However, as vitamin D is a fat soluble vitamin, meaning that our bodies store it rather that expel it in our urine, it should not be taken in excess. The NHS recommends taking no more than 4000 IUs a day. Vitamin D-rich foods include oily fish, fortified cereals and egg yolks.
Exercise is beneficial for anyone with MS and helps with muscle spasms and balance. The MS Society in the UK have put together a video of simple exercises that can help manage symptoms. Physiotherapy has also been recommended to improve mobility.
Anyone with MS can also ask their doctor about their eligibility to try disease modifying therapies that can slow down the progression of MS or make relapses fewer and far between.
Towards a cure
Vitamin D supplements
Research is still ongoing into whether vitamin D supplements can help to prevent MS, treat MS and how much vitamin D would be required. One study has found that taking 10,400 IU of vitamin D a day for six months reduces the number of immune cells that cause damage in MS, so vitamin D supplements could slow the progression of the disease.
Another study at the University of Cambridge revealed that vitamin D can promote myelin repair. Lab rats who were given extra vitamin D increased the number of myelin-making cells in their brain by 80%.
Stem cell therapy
A number of stem cell therapies are being developed for MS, such as haematopoietic stem cell transplantation (HSCT) and mesenchymal stem cell therapy (MSCT). The former uses chemotherapy first to destroy harmful immune cells, then resets the immune system with cells from bone marrow to create immune cells that stop the immune system from attacking itself.
MSCT uses cells taken from bone marrow, skin and fat. These cells can be used to promote the myelination and help the immune system against the disease.
Genetic research
A number of research projects are underway to understand the role of genes in MS. The University of California in San Francisco set up an MS DNA bank in 1997 and continue to gather DNA samples from people with MS and their family members. The data gathered will help identify MS related genes to understand better the cause of the disease and how it may be prevented in the future.
What can you do for World MS Day?
There are many ways to get involved for World MS Day. You can take part in the campaign online with social media, sharing your own personal experiences and using the #MyInvisibleMS hashtag. You can hold a coffee morning or a bake sale to bring people together, or donate to one of many MS charities to fund research towards a cure.
Remember that not all MS symptoms are visible to the naked eye. People with MS might look fine, but the challenges they face every day, the stigma surrounding the condition and the obstacles they have to overcome are often unacknowledged and unknown.
Let’s always aim to see the bigger picture. Share your stories and give your symptoms a voice. Sharing your experiences can help others to feel that they are not alone.
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