On May 31, 2017, we celebrate World MS Awareness Day. In case you didn’t know, MS stands for Multiple Sclerosis, a disease of the central nervous system. MS is a progressive disease for which there are treatments but no cure. As a matter of fact, researchers still don’t have a good understanding of what MS is and what causes it. Everyone’s story is different. MS Awareness Day is meant to spread worldwide awareness of the disease, and since this year’s theme is about “Life with MS”, I decided I would share my personal story.
I am calling this my worst kept secret because it is not something that I intentionally keep a secret from people. Usually, my health conditions don’t come up in general conversation and are not really anyone else’s business at all. Unless you knew me at the time of my original diagnosis, you might not have a clue that I have MS. I’ll admit, however, that part of the reason I am not particularly forthcoming with my condition is that there is a stigma associated with the disease. You have to worry about how the diagnosis can influence your relationships. You have to make a decision about whether you need to disclose your diagnosis to your employer and what it could mean for future employment opportunities.
Some of these concerns come from the fact that the public really doesn’t know what it means to have MS and what “life with MS” actually entails. That’s why I decided to finally share my diagnosis and story with all of you. I hope that I can encourage others to have the courage to speak up as well and discuss what their life is like with MS. The truth is that every person with MS has a different story. We all had different symptoms at different ages that resulted in our diagnosis. Some waited years for a diagnosis while others got a diagnosis in a short period of time. Some take medication and others do not. In some, the disease progresses quickly. In others, the disease sits dormant following the initial diagnosis. Each person experiences different symptoms to differing degrees. The one thing we have in common is the demyelination of our nerves and that our lives changed forever in the moment we received our diagnosis.
For me, the story starts as I am training to run my second marathon. Everything was going fine until one hot, Mississippi night in October when I ran in a 5k race. It was over 90 degrees even as the sun was setting, and I was pushing myself pretty hard to at least get an age group placement. I did not feel well running, I did not feel well when I finished, and I did not feel well the next day when I went to my son’s football game and another school event. I felt really weak and dizzy all the time. Over the next few days, the dizziness did not go away. I went to my doctor and got an antibiotic since an ear infection or some sort of sinus infection seemed the likely cause. When things did not get better after a few more days, he decided to attempt something called an Eppley procedure on me to realign the balance in my inner ear. It did not work, and he decided to send me for a CT scan worried that I might have a tumor. Things started getting much worse during the next few days. Although my CT scan came back clean, my dizziness never stopped and kept getting worse and worse. I felt dizzy and nauseated all the time without any relief. Then, the right side of my face went numb.
I am thankful for my amazing and proactive doctor, who quickly got me in for an appointment with a neurologist. I went in for an MRI after a few more days, but my condition was deteriorating quickly now. I could no longer drive or walk without holding onto a wall because my dizziness was so extreme. I couldn’t type or write or use my phone because I lose all fine motor control in my hands. After a terrifying hour or two in the MRI machine, I was sent right upstairs to talk to my neurologist. He explained that I needed more tests, but the area of my brain currently under attack indicated a diagnosis of multiple sclerosis. And that was it. My life would never be the same.
I had more tests, but none of them indicated any other areas of attack. As a result, what I really had is known as a clinically isolated syndrome. Technically, they can’t call it multiple sclerosis without multiple attacks, but it is really just a special case of MS. It also meant that I was continually waiting for the next attack. Although the steroids cleared up my symptoms, I suffered from lingering fatigue, muscle spasms, and migraines. I didn’t know who I was anymore. I was not running or doing martial arts. I no longer felt like the unstoppable super- hero I was in my previous life. Everything had changed.
Part of the problem with a diagnosis of MS is that nobody knows what to expect. My individual experience is going to differ from every other person suffering from the disease. What I do want people to know is that there is hope. There are actually people out there living relatively normal lives without any obvious outward signs of the disease. I didn’t know about those people because we do such a good job of keeping quiet. If I had known this from the beginning, however, maybe I would not have been so scared and depressed. I just assumed my life was going downhill quickly and that I might not be able to walk or work within ten years. How silly I feel about that now!
This fall will mark six years since my diagnosis. I still battle fatigue and the occasional bout of numbness, but I have learned to manage those symptoms by avoiding excessive heat, getting enough rest, and giving attention to proper nutrition. I am not on medication for the disease. I see my neurologist every year, and he monitors my condition with an annual MRI. Luckily, however, the disease has not progressed. Unless I mentioned it, you would have no reason to suspect that I was fighting this disease of the central nervous system. So, don’t automatically assume that your life is over and your future is bleak if you receive this diagnosis. Let my story of life with MS give you hope and courage in your battle.
For more information about multiple sclerosis, please visit these sites: