MS - The Diagnosis

Mollie writes:

In the spring of 1993 I was working my way to graduation from PSU.  I was taking a full class load (18 hours), parenting, building a new home, and volunteering in my kids schools.  My plate was full and I was excited to move on to "the rest of my life" which would, for the first time since giving birth, include work for money.

So you can imagine that I wasn't thrilled to wake up one morning with no vision in one eye, and seriously blurred vision in the other.  In the past year, I'd been through diagnostic hell trying to determine the cause of a speech loss in the spring of 1992.  We'd chalked it up to a TIA (transient ischemic attack, or "mini stroke").  I was watching my diet, getting more exercise, and just generally behaving myself.  This couldn't be happening.

I got on the phone to my doctor, who, bless his heart, always took me seriously.  He scheduled me to see an ophthalmologist who promptly decided to ignore me.  She did an eye examination, documented my status with fluroscein angiography and eye photography,and sent me home to wait it out.  Finals were in one week and I was incensed.  I wasn't a wait it out type of person.

In my pre-mommy years I had worked for physicians who specialized in neurology, neurosurgery, or ophthalmology.  I had spoken with one neurologist, had a CAT scan at another's facility, and now I decided it was time to call my former employer, an ophthalmologist.

He was out of town, but an associate saw me and requested that Kaiser send over my eye photography.  When my former boss got back into town, he reviewed my records and called me.  It looked like optic neuritis, but he thought I should see a neuro-ophthalmologist to confirm diagnosis.  Off I went to Oregon Health Sciences University for confirmation.

In a nutshell, the neuro-ophthalmologist was able to confirm that I had optic neuritis, more importantly, that I probably had multiple sclerosis.  I was both taken aback and relieved.  After ruling out brain tumors, etc, multiple sclerosis seem almost manageable.  But MS was a weird disease.  In the days before the internet, when you couldn't just do a google search and join on-line support groups, the diagnosis of MS had all the warmth of a stealth bomber.

John and I decided to take the high ground.  I had managed to take my finals at PSU and would be graduating in weeks.  The house we were building would be ready in weeks and I could see that change was in the air, with or without a debilitating disease.  I decided to make the best of it.

The best of it included moving, putting the boys in new schools and getting a job for a wonderful business in NW Portland that managed to spend the next six years on the MS roller coaster with me.  Once I had the optic neuritis episode, my MS exacerbations decided to conform to the usual array of symptomology and life became, if not easier, more predictable (not that MS is predictable, it isn't).  But having a label for what ailed me counted a lot.  With the oldest in middle school and the youngest a fourth grader, going back to work at that time was a good step.

Well, there you have it.  Since being diagnosed in 1993, my life has been interesting.  I've been on different interferons, had really wild exacerbations, taken part in a double blind study at OHSU, had my liver go on strike, you name it.  But I've also raised my kids, traveled to South America, Australia, Europe, Egypt and China and otherwise enjoyed the whole buffet of life.   My kids ended up being responsible adults, my husband enjoyed career success, and in general all went well with our little world.

We can't choose a lot in this life.  We can't choose health when the cards dictate MS, we can't choose calm when the weatherman predicts small craft advisories.   But we CAN choose attitude, and my choice was a good one for our family.  There's something really trite about saying "Make the best of a bad situation" but when your children are involved, a positive outlook is a good choice.