Multiple Sclerosis Recap for World MS Day

A little over two years ago I was diagnosed with Multiple Sclerosis (MS). As a reminder, or for those who have yet to read my story, I had my first relapse back in 2017 when I lost my eyesight. Yes, you read that correctly. My optic nerves swelled up and my eyes and brain were not communicating very well so I couldn’t see anything. Well, I had pockets of vision, but not very much. Optic neuritis is often one of the first signs of MS. However, they did not diagnose me at the time because I did not have any activity on my brain scan. But, I had to be monitored every year for 5 years. If in 5 years all of my scans were clean, I would have only needed a scan every 5 years or so. My scan in 2018 was clear – wahoo, one down, 4 to go. Even though I had no “noticeable” relapse, in 2019 my scan showed signs of MS activity and I heard the words, “I am sorry, you have MS”. 

As a reminder, Multiple Sclerosis is an autoimmune disease that impacts the central nervous system (brain and spinal cord). MS is typically diagnosed between the ages of 20-40 and is two or three times more common in women than men. Roughly 2.8 million people in the world have MS. There is no known cause of MS, but they believe there is a mixture of environmental and genetic factors that contribute. And, often the start of it is triggered by stress or a virus. I believe my environmental links to MS were low Vitamin D levels and the epstein-barr virus (mono). And, my first relapse happened at a time when I was incredibly stressed and anxious.

When someone has an MS attack or relapse they will have damage to their myelin. Myelin is a fatty material that insulates the nerves and when we lose our myelin it impacts how the brain conducts electrical impulses to and from the brain. 

A true MS relapse/flare/attack has to be at least 24 hours long, 30 days from a previous flare and can last months at a time. If symptoms last under 24 hours it is called a pseudo-relapse or pseudoexacerbation. This doesn’ mean the symptoms aren’t real, they just aren’t causing permanent damage to your myelin. Symptoms can include loss of vision, fatigue, bladder/bowel problems, cognitive changes, difficulty walking, pain in the form of stabbing, electric, burning, aching, prickling, or squeezing. These are just some of the symptoms. Many MS symptoms are not noticeable, you wouldn’t look at me and assume I have MS. In fact, you might be quite surprised to learn I have MS.

MS has many treatment options to help slow down or modify the disease and help prevent relapses. There is nothing to cure MS, yet. 

MS is something that is very hard to understand and educate. I believe part of that is because no two cases of MS are the same. And, there are so many possible symptoms. Plus, you may have a flare and lose a lot of myelin or lose a little impacting your long-term health and stability. My experience with MS is going to be very different from your Aunt Sally. And, your Aunt Sally is going to be very different from your neighbor John. In general, when people with MS overheat they notice their symptoms more. So, for instance, when my body overheats, my eyes get a bit blurry. It goes back to normal when I cool down. But, every now and then, you might run into someone with MS who has that issue with cold temperatures. 

My MS diagnosis was certainly life changing and eye-opening, but I have made a decision to not live in fear. To do the things I love, until I physically can’t. I go for a long walk pushing my kids in their stroller up and down hills daily. I like to play softball during the summer. I enjoy playing golf with my husband. I started learning how to sew this past year. I love playing with my kids. MS will not stop me from loving and living my life.

I would definitely take this diagnosis away if I could, but a few good things have come from my diagnosis. One is learning to let go of the fear of the unknown. Handing my future over to God because he is and always has been in control of my life. 

Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

Psalm 23:4

The other being able to realize how precious the little things are in life as well as life itself. Before my diagnosis, I didn’t appreciate my independent life in the way that I do now. Every phone call, survey, appointment I am reminded that my independence could be striped away at any moment. I could lose my sight again. I could lose my ability to walk (or walk normally). I could lose any number of nerve functions needing more help. While I am praying that my MS doesn’t take away too much physically, I am remaining hopeful that I will continue to trust in God and lean on Him no matter what comes my way. 

But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Isaiah 40:31

Life isn’t always what we expect. And, it can be simultaneously filled with good and bad things. This year has been fairly easy for me regarding my Multiple Sclerosis status. However, it has been filled with lots of loss, sadness, and questions. My blog’s name is Can’t Stop, Won’t Stop S’myelin. And, while I want to live a life full of joy, trusting in Jesus, that doesn’t mean I don’t hurt or have seasons of grief.