“I’m not dead yet!”

AUDIO VERSION

On May 6, 2012, we were taking another one of our walks around the neighborhood when it began to rain.  There was a stand of trees a short distance ahead and we decided to run for shelter.  But Priscilla found she couldn’t run.

This was the date we looked back on ever afterwards as the one on which we both knew for sure that, as we put it then, “something was definitely wrong.”  In fact, we both had the ominous feeling that Priscilla had a serious disease that could even be fatal.

A couple of weeks later we went to the wedding of a good friend’s daughter.  Priscilla was barely able to climb the stairs to the reception hall.  She customarily danced to just about every song at weddings, but her legs wouldn’t support her this time.  We danced to only a few slow numbers as she clung to me for support.

In the providence of God, our friend, the mother of the bride, was an experienced and wise doctor.  The day after the wedding, after sharing sandwiches left over from the luncheon Priscilla had catered for the bridal party, we described her symptoms.  When she walked, she felt as though she were plowing through waist-deep snow.  She was having difficulty keeping her balance and getting up from a squat.  There were some other things we thought might be significant.  Her leg muscles had begun to twitch.  She’d noticed that she was now always the last one to finish eating, as if swallowing was beginning to be a problem.  Often she couldn’t come up with the right word, or she’d say another one by mistake.

Our friend listened carefully and sympathetically, and then observed that while these symptoms, if taken together, might indeed suggest a serious neurological condition, they didn’t necessarily all have the same cause.  The muscle weakness that was creating the walking and balance issues might be due to a B12 deficiency that could be resolved with supplements, or to a musculoskeletal problem such as spinal stenosis that could be treated by surgery.  The swallowing problems might be caused by something as simple as acid reflux.  Muscle cramps and forgetfulness were symptoms of hypothyroidism.  And so on.

This made a lot of sense to us.  We’d been feeling so hopeless that we hadn’t even made any appointments with doctors, but now we resolved to pursue a diagnosis actively.  Priscilla’s doctor scheduled her for an appointment in four months.  But within a few weeks, when the twitching spread to her arms, we called the office in some desperation and the nurse practitioner saw her that afternoon.  She followed the exact course our friend had sketched out, first ordering blood tests to investigate B12 deficiency and hypothyroidism.  If these tests turned up nothing, they’d do an MRI to check for spinal stenosis.  If non-neurological causes seemed to be ruled out, Priscilla would be referred to a neurologist.

Five days later, the nurse practitioner called us with the blood test results.  They were all normal.  They’d decided to do a liver panel with the blood they’d already taken, as problems with the liver could lead to muscle weakness, but this was a long shot.  They were clearly thinking in a different direction.  The doctor wanted to do a full spinal MRI and schedule Priscilla to see a neurologist right away.  The MRI would detect any spinal stenosis, but it would also be important for diagnosing a condition such as multiple sclerosis (MS).

We told them we were leaving the next day on a trip to Colorado for a wedding and then a vacation.  “When are you getting back?” they asked.  Monday evening, July 2, we answered.  They scheduled the MRI for the next morning.  In the space of half an hour we then had a flurry of calls from our doctor’s office and the neurologist’s office to set up Priscilla’s first referral appointment.  All this from a practice that had originally considered four months soon enough to see her.

This created such an impression of urgency that we lay down in bed, dazed, trying to come to grips with the implication that maybe she did have quite a serious disease after all.  But we at least managed to find some humor in the fact that while Priscilla was having difficulty even walking, the doctor’s office had cautioned her not to waterski or engage in any high-impact sports while in Colorado.

The next day, as we left on our trip, Priscilla bravely pulled her suitcase down the lengthy concourse of the McNamara Terminal at the Detroit airport.  This took so long and was so tiring that we nearly missed our flight.  We knew we’d have to do things differently when we got to Denver.  I resolved to try to arrange for a wheelchair at our arrival gate.  No need:  we saw a porter pushing an empty one right towards us just as we entered the terminal!  We flagged him down and explained our situation, and he was happy to take Priscilla to the baggage claim and the car rental island.  He’d been on his way back from delivering a passenger to a nearby gate.

Priscilla had her spinal MRI the morning after we returned and she saw the neurologist three days later.  The MRI had shown no spinal stenosis, but there were no lesions indicative of MS, either.  The neurologist wanted to do more blood tests, to check for Lyme disease and vitamin E deficiency, and also an MRI of the brain to see whether there were any lesions there.  An MRI appointment opened up for that afternoon and we gladly took it.  We wanted to get to the bottom of this.

Early the next week we got a call from our doctor’s office saying that this MRI had detected “some minor scarring” on the brain.  They were concerned enough that they got us back in to see the neurologist two days later.  But he wasn’t worried.  “Those aren’t fresh lesions,” he explained, adding that “everybody has some scarring on their brain by the time they get older.” He didn’t think Priscilla had a neurological disease.  Instead, he theorized that her spinal cord was only now manifesting damage it had received in a car accident twelve years earlier, when Priscilla had suffered a compression fracture of one of her vertebrae.  He asked us to have those medical records sent to him.

But just to be safe, he scheduled a visual evoked potential test, another important tool for diagnosing MS, as well as an electromyogram (EMG) to check for ALS (Lou Gehrig’s disease).  These tests would have to wait until the end of the month, however, because we and he were about to leave on already scheduled vacations.

Our next trip that summer was to see my parents in Rhode Island.  While we had no diagnosis yet, most of the innocent potential causes had been ruled out, suggesting that whatever Priscilla had might be serious indeed.  But she was upbeat and determined to enjoy the trip.  “And I don’t want you moping around, either” she admonished me.  She cited Jesus’ parable about not fasting while the bridegroom was still present and insisted,  “I’m not dead yet!”

Once we got to New England, Priscilla went to the salon where she’d always gotten her hair done when we lived there.  She’d been wearing her hair past shoulder length, but now, suspecting she’d have less time and energy to care for it, she asked her favorite stylist to give her a “wash and wear” haircut.  When he was done I told him it looked great and with a nod he replied, “Every so often you need a change.”

The highlight of the trip came when, as an early birthday present to me, Priscilla treated my parents and me to a cruise that took us around Narragansett Bay to see its many lighthouses.  Afterwards my father took us to dinner at a bayside restaurant.  At his insistence that I should get anything I wanted because it was my birthday party, I ordered lobster.  If this was terminal illness, it was going pretty well so far.