What Is MS? A Guide to Understanding MS
For those of us with multiple sclerosis (MS), we quickly become experts in all aspects of the disease. Once the numbness and confusion of diagnosis pass, you’ll find us on google or other trusted MS websites, looking up symptoms, treatments, and research progress and trying to make sense of our new reality.
It can be easy to forget that those around us don’t necessarily have an encyclopedic knowledge of MS and often can’t tell it apart from other conditions.
I remember being at a party shortly after my diagnosis and someone I barely knew came up to me with a sympathetic smile on his face and said, “my dad’s got MND (ALS) so I know what you’re going through.”
I was also confused the other day when my colleague started talking about Michael J. Fox and how brave he is. I played along for a while but eventually had to point out that he, in fact, has Parkinson’s disease.
Most MSers have also experienced a well-meaning friend telling them all about their brother, auntie, cousin or postman’s wife who has MS and can’t even feed themselves or get to the bathroom without help.
All this is well-meaning but highlights the fact that most people have no idea what MS is, how it’s different for everyone and how the prognosis doesn’t have to be disastrous.
In this article, I’d like to pretend I’m talking to one of these people and telling them all about it. I’ll imagine they’ve asked what MS actually is and I’ll sit them down and start talking.
What Is Multiple Sclerosis?
MS is an auto-immune disease where the body is attacking itself. It’s a neurological condition, so it affects your nerves. It makes your immune system faulty, so instead of protecting you by fighting off infection, it attacks your nerves instead.
It’s a condition that affects your brain and spinal cord. There’s a coating around your nerves called myelin, and in MS this coating is damaged which causes a variety of symptoms, depending on where the damage is.
I like to imagine a flex on an electrical appliance. The plastic coating is the myelin, and the wires underneath are protected by this plastic. If it’s damaged, the appliance won’t work properly.
It’s always amazing to me that something so small causes such havoc! That’s all that’s wrong with me! Some bits of myelin are damaged, causing the signals to my brain to be disrupted, and this causes all hell to break loose! Ten years ago, I’d never even heard of myelin, yet it was conspiring beneath my skin to ruin my life.
Are There Different Types of MS?
Yes, there are four different types of MS:
- Relapsing and remitting MS (RRMS) – This is the most common form of MS, and about 85 percent of people are initially diagnosed with this. People with RRMS have flare-ups of symptoms called relapses which can last a few weeks but can then get better completely. Over time and if you have a particularly nasty relapse, then residual damage can occur which causes disability.
- Secondary progressive MS (SPMS) – In SPMS symptoms worsen over time or without the regular relapses and remissions. Most people with RRMS will develop SPMS over time. I am in the process of being diagnosed with this as I don’t have obvious relapses and scan show no new disease activity.
- Primary progressive MS (PPMS) – Only around 10 percent of people with MS have this form of the disease. It’s characterized by a steady worsening of symptoms from the beginning with no relapses or periods of remission.
- Progressive relapsing MS (PRMS) – This is rare as only 5 percent of people with MS have this. It’s characterized by steadily worsening symptoms from the beginning with acute relapses with no remission and recovery,
There’s also such a thing as Clinically Isolated Syndrome where you have one major relapse, completely recover and never have any other symptoms. I think I’ll choose that type of MS, please!
What Causes MS?
This is a good question, and scientists and medical experts have been arguing about what causes MS for years. From genetics to environmental to lifestyle, here are some potential causes of MS.
No single gene causes MS, and over 100 different genes might affect your chances of getting it. It’s not directly inherited from parent to child, and there’s little chance of you being more likely to get it just because a family member has it.
MS can occur more than once in a family, but it’s more likely this won’t happen. According to statistics, there’s only around a 1.5 percent chance of a child developing MS when their mother has it and 2.7 percent chance if your sibling has it.
This is a relief for parents like me as the guilt of having MS is enough without worrying about passing it on to children.