B60. Living with MS

Most people who know me don’t even know I have MS.  It doesn’t define me.  I’ve been fortunate.

Every MS story is unique, because the disease affects everyone differently.  My non-medical description of MS is this: MS attacks the brain, at any moment and at any spot it wants, and since the brain controls/processes almost every function of the body, the attacks can affect anything from vision to mobility to memory to . . . (you fill in the blank).

I’ve been a stubborn patient.  When I was diagnosed over 8 years ago, I knew little about the disease and quickly began researching and soaking in all I could about it, from the sources most respected by the medical community and from wherever else Google took me.  The basics: There is no known cure for MS, because there is no known cause.  And there are several invasive treatments available, none of which claim to repair any damage or cure the disease, but all of which, at varying degrees, claim that they “seem” to slow the future progression for most patients.  This was a red flag to my skepticism.  How can we measure what might have been, had we taken or not taken these daily or weekly injections for the rest of our lives?  I looked around at the people with MS.  They were on treatments and dependent on scooters or canes for mobility. I will likely get there, but I wasn’t ready yet.

My neurologist was/is one of the most respected in the field, and it’s not that I didn’t trust his years of experience, but rather that I knew that no one could possibly know my body better than I, and that I am the only one who has to live in it every day.  Pharmaceuticals have always scared me.  I think, if a drug can make that much difference in my body, and especially if its makers say they don’t know why or how it works or doesn’t, then what else is it doing to my body at the same time?  I’m not a doctor, and I don’t recommend my choices to anyone else, but up to now I have taken the driver’s seat in my own MS, and I’m doing pretty well.  Will I regret my stubbornness in 20 years, or 5?  Maybe, but who will be able to say, if I had taken treatments I would have fared better?  I admit it’s been a gamble.

My MS symptoms began at least 20 years ago.  In the early years, I dealt with occasional numbness in half my body.  Maybe it would begin in one foot and slowly work its way into all that side of my body, returning to normal in about a month.  The worst of all symptoms came suddenly in 1997 and still lingers, although to a very small degree compared to its original strength.  It was a scary feeling for which I had no words, nor do I yet.  I used to call it dizziness, but that was not even close.  I came to just refer it as “MS head,” and once in a while another MS sufferer would understand what I meant.  The feeling would come anytime I stood or sat upright and still for even a few seconds.  It would quickly worsen until I would reach the point of passing out.  Fortunately I gradually learned that I could control it by leaning on something.  If I had a chair back, or a wall, I could head off the feeling.  As the years passed, the symptom decreased, and I became more able to control it.  Now I just know to always have somewhere to lean – a wall or a chair in most settings, a podium if I speak.  And I actually bought a cane this year to use for only one occasion for which I anticipated having to stand upright with nowhere to lean, the day I was presented (with others) as a new member of my new church.  The cane has lived in the closet since that day, but I know it’s there if I need it.

That’s how the symptoms work, at least for me.  They come unexpectedly, sometimes lasting a few hours, sometimes many years, and gradually fade away as other symptoms continually come to join.  The term “Multiple Sclerosis” means multiple spots (on the brain), which are scars from the “attacks.”  An MRI shows that some spots are new and active while others are old and fading.

I still have the same neurologist I started with.  I like him and really do listen to him, although I am probably a frustration to him.  Instead of treatments, after my diagnosis I put myself on fairly intense vitamin therapy.  Seeing a lot of discussion on vitamin D, which at that time was not recognized in the medical field as being associated with MS, I began taking D supplements, and also B complex, calcium, and multiple vitamins.  It seemed to make a difference.

In 20 years I’ve only missed one day of work due to MS or MS-related appointments.  That was a morning I got up with such dizziness that I knew I couldn’t drive or teach, but by lunchtime the dizziness had gone.  And a tricky thing about MS is that you never really know whether a new “symptom” is MS or if it’s just something else.  MS gets blamed for everything!

The struggles are on-going.  Before one attack is controlled, a new one has added another symptom.  I’m coming out of a period of physical exhaustion, happy to be regaining my missed energy.   Also at this moment I am seeing one physical therapist to strengthen my left leg/knee/foot, and another to strengthen my pelvic muscles.  I’m doing over an hour of exercise homework every day, and I’m on a completely new diet, having exchanged almost everything I normally eat and drink, for new tastes.  If I make plans to meet friends for dinner, they never know that I spend 30 minutes on-line studying the menu trying to figure out something that fits my diet, so that when I’m at the restaurant I can order seemingly naturally without ever mentioning the struggles.  But it’s working.  I’m dreaming of running again after two years of leg issues.  I’m winning this battle and preparing for whichever one might show up next.

MS is not a death sentence.  It’s a challenge, yes, but no greater than yours, or yours, or yours.  A physical challenge is much easier to deal with than other kinds.  MS is progressive, so I know it will continue to get worse, not better, and I know the cane might come out of the closet for good one day, but since I don’t really have a choice, I’ll live with it, just like you live with whatever challenges are yours, and life is pretty good!