The Fear of MS Progression

Cathy Health Guide
  • When I was diagnosed with Multiple Sclerosis I was told my first two years would be a benchmark to what “type” of MS I would have for the rest of my life.  I’d have to wait to see how many exacerbations I’d have, and how those exacerbations would affect me.


    Wait and see? Were they kidding me? One minute I was young, active and vibrant, the next I’m told to wait and see how disabled I may or may not become! People always say G-d gives us as much as we can handle.  I don’t know if I believe that or not.  Whatever I believed, I did what I could to put my best foot forward (not literally!) I began to voraciously read everything about MS.  Knowledge is power – that is something I do believe. 

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    The knowledge I first gained scared the hell out of me.  Pamphlets showing people in wheelchairs; long lists of possible symptoms. Three patients I met at my MS Center were rapidly spiraling downward to the point of being incapacitated and homebound.  One young woman I met was married, and her husband left her because of her chronic progressive MS.  She was forced to move in with her parents.  Her MS began affecting her kidneys and, in turn, other parts of her body.  In her desperation she clung to me for moral support.  I became frightened while watching her MS quickly disable the use of her young body. I felt her pain deeply, and listened to her fears as best as I could.  Soon, she stopped calling.  Months went by, and I wondered what had happened to her.  Then one day I ran into her parents. They told me their daughter had passed away; their stoic gaze was devoid of human emotion.  They looked beaten down by life, and it was too painful for them to be near me.  They said good-bye and kept walking. My heart ached for her as I watched them go, and it selfishly ached for me, too.  It ached for me because I now faced my own mortality. Would I follow in her footsteps?  After all, we both had MS.


    Days turned into weeks, months turned into years.  After two years I had a grand total of four exacerbations including numbness, tingling, weakness and fatigue.  Those were the days of no disease-modifying medications; a course of steroids was the medication of choice to speed up the remission process (“a little dab’ll do ya”!!) and when the course was over, I was “almost” as good as new.  


    My doctors finally concluded I had relapsing-remitting MS.  From that day forward, my marriage and taking care of my son were my primary focus. I integrated my responsibilities at home with my daily battles with my MS.  My fear of progression?  I don’t think that will ever truly go away.  As years pass, I’ve noticed parts of my body (and brain) don’t function as well as they used to.  Aging?  MS?  I don’t know which may be responsible. What I do know is I’ve learned that focusing on my fears of progression is a waste of time; nothing will change the hand I am dealt.  I take good care of my health, stay informed about MS, and live each day to the fullest.  I now live by “Carpe diem!”– “Seize the day!!”

Published On: November 09, 2011