Thursday, July 1, 2010

MS - The early years

Mollie writes:

It's tough to figure out when MS (multiple sclerosis) actually became a presence in my life.  Up until 1985, I was a reasonably healthy, somewhat uncoordinated person.  I've always been a bit of a klutz, so for me, defining what was MS and what was innate inelegance is nearly impossible.  But in 1985 I fell in the garage, breaking my foot, and dropped a kitchen knife into my other foot while chopping vegetables.  That year, falling and dropping things just seemed to be a natural occurrence.   I chalked it up to overexertion.

And over exert I did in those days.  I have been known to move pianos by myself, spread trucks full of barkdust, mow huge lawns and perform other acts of domestic magnificence.  I played tennis, hiked and camped, and was learning how to ski before I found out that it was just more than a clumsy gene that landed me on my keester more often than normal.

It didn't hurt that in 1986 we took the kids to Europe and lived a spell in Switzerland, then camped our way through the Loire Valley.  We maintained such an active life that if someone had mentioned that I had a progressive debilitating disease, I would have walked away laughing.  But that's how MS works.  You can have a 1985 when you can't walk and chew gum, but when 1986 rolls around, bingo, you are hitting the slopes.

By the early 90's I knew something was wrong with my feet, but assumed it was those knobby bunions I had.  So a bunionectomy was performed, and amazingly my clumsiness lingered.  I'd also noticed an elusive fatigue that would float in like a dense fog.  It was not accompanied by depression or other physical manifestations, just a stifling of physical energy.  I assumed I was getting older.  I was almost 40!

Most folks show early symptoms of MS in their twenties.  I'm sure that I was in that cluster, but simply didn't worry about what didn't seem broken.  As a result, I didn't consult a physician about the clumsiness and fatigue until early 1992.  By then I was facing my fortieth birthday and had to admit that something else was "afoot."  But since I hadn't spent the past 15 years fussing over my own innate clumsiness, it took a stroke like episode to get me to the doctor.

In 1992, while my husband was in Chicago, I was looking at real estate with an agent who was showing me a house that was ridiculously overpriced.  She was pushy, even after I told her that my husband would have to look at anything before we admitted interest in a property.  She was waxing eloquent about the faux gold bathroom fixtures when I realized I was having a major medical event.

I couldn't articulate.  I was thinking in full sentences, searching for the word "pretentious" when I realized I knew the word, I  just couldn't move my mouth muscles to form it.  Then I realized I couldn't pronounce any other sounds, and quickly ducked out the door of the house.  The agent was left there with her mouth hanging open and I beat a path home.

I have no idea why I didn't go immediately to the hospital.  But with a husband out of town and two kids wanting their dinner, St. Mollie of the Martyr Mothers went home, paid the babysitter, fixed dinner and slowly recovered her ability to form sounds, then words.  Having had no headaches, no other neurological phenomena, I just decided to wait for my husband to return from Chicago and pursue medical intervention then.  Wisely, John came  home the following day.

I really didn't expect the CAT scan the doctor ordered to come back positive for a small lesion in my brain.  In the early days of imaging, MRI's weren't available, let alone used routinely to rule out MS.  It wasn't state of the art then.  Instead, CAT scans were run to rule out stroke, tumors and other neurological pathology that might cause an incident like mine.  It was found easily on a scan.

I look back at that time and wonder how I managed to keep my nerve.  Mostly, I was able to do so since I felt so well in every other way.  I wasn't fatigued, wasn't doing anything weird, I simply lost the ability to articulate for 2 hours.  I was still tripping the light fantastic on my feet, playing piano, reading and otherwise enjoying my life.  And parenting, it was a snap.

After significant follow-up of medical diagnostics, we all figured I had experienced a TIA (transient ischemic attack).  My cholesterol was a little high (220) and my father had been battling coronary artery disease for years.  So we adjusted my diet, did more exercise, and just made a plan to improve my personal habits with respect to my overall life style.

No problems.


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