‘MS for People Who Don’t Know Much About It’ was too long for a title, and my OCD kicked in when some version of that wouldn’t fit nicely on the Blog Posts list to the right. After trying and failing numerous times to come up with something catchy, I finally decided to just title it what it is. Let’s make this simple. Let’s make MS as simple as possible to understand. Understanding just the basics can help so much if you find yourself having a conversation with someone that has been affected by the disease. You don’t have to know everything, but just a few simple facts can go a long way when you find yourself in that situation. Trust me.

When I first learned I had Multiple Sclerosis, I knew practically nothing about the disease. I did not personally know anyone with it and had only recently heard more about it in the news because of celebrities such as Christina Applegate and Selma Blair. Even then, I learned very little from the articles that I read about their diagnosis and experiences. Not only did I have to learn for myself what I was up against, but one major thing I was tasked with was learning how to explain it to my children. At the time of my diagnosis, my daughter was 12 and my son was 14. We kept it to ourselves as long as possible, waiting for the best time to talk to them about it, but my daughter is very perceptive. She caught on quickly and knew something was wrong, so we had to tell them sooner than we had anticipated. Both my kids are kind souls, sensitive and compassionate, and because of this, I knew it would hit them hard. I wasn’t too worried about talking with my daughter. As long as I provided her with all the details about the disease and how we were going to treat it, I felt she would be ok. Telling my son is what worried me. He relies less on facts and more on emotions and tends to expect the worst in situations, particularly when it is medically related. I knew it would take a little bit longer to explain it to him, I just had to make sure it was done in a way that left little to no lingering questions. I know my son, and he loves to Google. The day that we met with the neurologist, the doctor told me to be very careful what I read on the internet about the disease. Every single person with Multiple Sclerosis has different experiences and different symptoms. Someone else’s story is not going to be my story. Let me say that again because it is so important. Someone else’s story is not going to be my story. I not only needed to remember that myself, but I needed to make sure my kids understood it too. I have already experienced so many reactions from people that learned I had MS, and they tell me the story of their father’s brother’s nephew’s cousin’s former roommate (if you get the reference, you and my son should get together). They would tell me all about how they had MS and how horrible it was (or so they heard). When I hear those stories, and when my children hear them, I want us all to remember, someone else’s story is not going to be my story.

So, I wanted to share some simplified information about Multiple Sclerosis in the hopes it will help make you more aware of what it is, if you aren’t already. It may help you, or someone you know in the future if there ever is a diagnosis.

• Multiple sclerosis (MS) is best described as a disease of the central nervous system (brain and spinal cord) that occurs when your immune system attacks the protective covering around your nerves. The exact cause of the disease is unknown, although it is thought to be an immune system malfunction.
• The protective covering around your nerves is called myelin, and it is similar to the protective covering around electrical wires. Without that protective covering, the nerves become damaged. Messages that are normally sent rapidly between your brain and the rest of your body, and vice versa, are interrupted and may even stop completely when there is damage.
• MS symptoms are dependent on where the myelin is attacked and damaged, and they are unpredictable and can change over time. This is why symptoms vary widely and the disease affects people so differently. One person may deal with just one or two symptoms while another person may have many more. This can change at any time during the lifetime of the disease. Remember that keyword – unpredictable.
• The more common MS symptoms include extreme fatigue, walking difficulties, muscle weakness and spasticity, vision problems, numbness or tingling, vertigo and dizziness, cognitive changes, pain and itching, and emotional changes. Unfortunately, there are so many more, though not as common, but equally scary for the patient.
• There are four types of multiple sclerosis: Relapsing-remitting MS (RRMS), Secondary Progressive MS (SPMS), Primary-progressive MS (PPMS), and Progressive-relapsing MS (PRMS). Each type of MS differs from person to person and the illness is diagnosed based on a person’s nerve damage. Some patients will eventually progress through all four known stages of the illness.
  • Relapsing-remitting multiple sclerosis (RRMS) occurs when symptoms develop that respond to treatment and then resolve. Episodes of remission may last for weeks to years. 85% of people initially diagnosed have Relapsing-remitting MS (RRMS), the most common type of the disease.
  • Secondary-progressive multiple sclerosis (SPMS) occurs when the symptoms of an exacerbation don’t fully resolve during remission.
  • Primary-progressive multiple sclerosis (PPMS) progresses over time, without episodes of remission.
  • Progressive-relapsing multiple sclerosis (PRMS) occurs when there are escalating symptoms over time along with intermittent episodes of remission.
• An exacerbation — also known as a relapse, a flare-up, or an attack — is a period when disease activity increases. Exacerbations generally last for several days but can last weeks, or in some rare cases, months. Triggers that cause an exacerbation vary from person to person but typically include stress, heat, infections, lack of sleep, diet, smoking, and certain medications.
• There is no cure for MS. There are treatments to help speed the recovery from attacks, modify the course of the disease, and manage symptoms. MS isn’t a fatal condition in most cases, and most people with MS have a close-to-normal life expectancy since it affects the quality of life more than longevity. It is estimated that, on average, someone with MS lives about seven years less than the general population, depending on the severity of the disease. This gap continues to shorten thanks to ongoing research.

If you didn’t already know about MS, I hope this was helpful to you. It’s an unpredictable, sneaky, awful disease, and for some, it is an invisible disease. So many of the symptoms of MS don’t show from the outside, so it can be almost impossible for others to understand that even though we ‘look fine’, we aren’t. If you want more information, check out the National Multiple Sclerosis Society website. It has a wealth of educational tools and information about the disease, emotional support resources for those with MS and family members and caregivers, wellness strategies, ways to volunteer or donate, and so much more!