Multiple Sclerosis...My Story

Aug. 12, 2013

This is a blog for MS patients and those who love them.  I hope to share ideas that have made my life easier as an MS patient as well as the stories of others.  Please remember that nothing replaces a good relationship with your neurologist.  MS is extremely varied in the way it affects people, so what works for me may not work for you; I can only tell you what I’ve learned and hope it helps.

Let me start with my own personal story.  In 2005, just before a trip to Disney World with my family, I began feeling a slight numbness in my toes.  As with most illnesses, I hoped that if I ignored it, it would go away.  It didn’t.  Instead, it began to creep into my calves.  I mentioned it to my doctor at my regular checkup and he told me it was likely to be some form of neuropathy, which can occur for no good reason.  Still, over the next eighteen months, he sent me to a rheumatologist, a neurologist, and an endocrinologist.  None of them could put a finger on what was happening. 

In the meantime, the numbness was working its way into my knees.  It was a partial numbness that didn’t stay with me all the time.  By the middle of 2006, my writing career was taking off and my books were selling. Schools were frequently requesting that I visit to talk to kids about literacy.  Since you can’t do that while teaching in your own classroom, I made the painful decision to give up teaching to write full-time. Before I left my classroom permanently that spring, I realized that I could no longer reach the end of the eighth grade hall without feeling as if my legs were going to give out on me.  My doctors were still trying to figure out what was going on.  Then my balance went wacky.  I couldn’t walk across the hallway without tripping or falling sideways. I’d spent hours self-diagnosing on the internet with no luck.  A couple of times, my research sent me to the words, Multiple Sclerosis, but I figured that just wasn’t possible.  Nobody in my biological family had it.  What were the chances? 

Whatever was wrong with me, I decided that if this creeping numbness continued into my heart and lungs, I would die.  I must be dying. I began to put my affairs in order, thinking that my kids might have to attend college without me to back them.  My husband would be left alone to handle all of the stuff we had dealt with together over the years.  Of course, I didn’t tell anybody that at the time.  They’d think I was crazy, right?   I went back to the neurologist, and this time he decided to do an MRI.  That was loads of fun.  I’ve since learned to tolerate them without much grief.

I remember that all of these tests were happening over Christmas holidays and it was hard to be jolly with all of that hanging over my head.  In early January, Dr. Cunningham told me that I likely had MS and he’d confirm it with a spinal tap.  I cried when he told me, but my husband was there to hold my hand.  Dr. Cunningham asked me, “What do you know about MS?”

Images of wheel chairs and crutches and death raced through my brain.  They were the only visuals I had about the disease.  I’ve always believed that if you get the worst case scenario out in the open air, first, the rest is not so hard.  “Sometimes,” I blurted out, “you can die from it.”

He gave me a gentle smile and shook his head.  “Not so much,” he told me.  And with that out of the way, it got easier.   An infusion of steroids brought me back to a semi-normal state, though I’ll always have some numbness and imbalance.  I told my friends and family, not surprisingly, with tears.  They responded in kind.  Some looked at me with pity; others with a knowing expression that said, “You will get through this.”  I liked the second one better so that’s the one I decided to go with.

These days, I experience banding (a tightening in the chest also called the MS Hug), numbness in my throat and legs, occasional dizziness, sensitivity to heat, and of course, the ever-present, imbalance, and fatigue.  Thankfully they don’t all happen at once.  None of these, however, have stopped me from going through my daily routines.  

In this blog, I want to try and share my journey through this disease and its daily battles, most not seen by others.  We’ll talk about symptoms, things that have helped and the experiences of others.  Please feel free to comment.  I want to hear from you.