I have always been reluctant to share that I have multiple sclerosis (MS) because I feared I would be seen as a person with this sometimes debilitating disease, and not as me. Since my diagnosis, I have consciously made the decision to live life as normally as possible. Yes, I do have MS. Yes, my life has definitely changed, but the person inside has not. Inside, since the very beginning of this journey, I have always known that even though I have MS; MS is not who I am.
Sharing my story, in the hope of helping someone else, has been on the back burner of my mind for a long time now. I have finally decided that silence is not the best medicine, talking and sharing is.
MS is thought to be an autoimmune disease of the central nervous system (brain, spinal cord). There are five different types of MS. The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. The damaged nerves, which as of today cannot be repaired, are what cause the symptoms of MS.
Not everyone with MS will have the same symptoms. During an “attack,” different symptoms can manifest themselves. I initially had symptoms of MS more than fifteen years ago. My symptoms would appear and then, for the most part disappear only to reappear in a few days, weeks or months. Numbness in my legs, difficulties with my speech, items falling from my hands, tingling in my face and down my body whenever I turned my head, heat intolerance, balance issues, a tiredness that you can only imagine, and double vision.
There is no cure for MS.1 However, even fifteen years ago, disease modifying treatments, although still in their infancy, were available. Was I aware of these treatments, yes? Did I push for them, no. Would my disease progression been different had I received earlier treatment for MS? Yes, most likely. And this is why: it is now known that early treatment of MS may affect long-term disability outcomes.
If you think you have MS, or you know someone who may have MS, PUSH them for early treatment. Insist on a neurological consult and an MRI. Work with your neurologist to identify the right treatment option for you. Include those with high efficacy, high tolerability, and a good safety profile to help manage your disease.
Back when I first started treatment, there were DMTs available. These medications, as the name suggests, are capable of modifying or influencing the underlying disease course. They work by targeting an aspect of the inflammatory process to reduce relapses and slow disease progression. At that time, DMTs were available only by injection.
Today, people living with MS have more treatment options than ever, including newer disease modifying therapies, which offer higher efficacy and easier dosing. Nine months ago, I started taking oral medication daily in place of my daily injection. Check with your doctor for treatment options that may be a good fit for you.
Although the oral medication I take is not without a few issues, it sure beats taking a daily injection. I am thrilled with this new disease modifying delivery system, as is my entire family. My kids are so happy that mom no longer needs to have a daily needle!
I vividly remember sitting with my husband and each of my children and explaining that I had MS. My husband had been begging me for months to seek treatment and he actually suspected MS, so he wasn't surprised. My children were old enough to know something bad was happening to mom. When I told them of my diagnosis, although very upset, I think they had been thinking the worst and were relieved I wasn't dying. We all were.
My husband and kids had literally hundreds of questions for both the "patient" and the "nurse" side of me. They were all extremely supportive, demanded transparency (I guess I can't blame them for that) and wanted to be involved in my treatment.
Living with and properly managing MS requires a fulsome approach, including medication, diet and nutrition, exercise and proper rest, among others. Here are a few words of advice to consider:
Over the years, with the help and encouragement of my family and friends I have learned to manage my disease. It hasn't been easy but I have learned to ask for help. My family knows I need my rest and plans are sometimes fluid. Together, we have learned the importance of diet and nutrition and we all work together to prepare meals and to do the cleaning up. There are many times when I am not feeling well that I have a beautifully prepared dinner tray delivered to my bedroom.
Even though you may face challenges and roadblocks along the way, today, the future of MS treatment is brighter than ever. MS no longer has the grim prognosis it once did.
People with MS are so much more than the disease. We are strangers on the street or in the mall; sons and daughters; brothers and sisters; aunts, uncles, nieces and nephews. We are friends; husbands and wives; moms, dads, mommy and daddy. This has become my mantra for battling MS:
For more details about the information included above please visit: MS Society of Canada.