Back in pursuit of a diagnosis



Priscilla’s doctors had suggested in 2012 that perhaps the markers of her condition were simply below the threshold their tests could detect, and that we needed to wait for them to emerge further before she could be diagnosed. We decided not to see any doctors in 2013, avoiding large out-of-pocket medical expenses for that year, and to try again for a diagnosis in 2014. Priscilla set up four appointments for January to make as much progress as possible while the insurance year was still fresh.

We soon realized that these appointments were just about the only outings we’d be able to manage that month. To keep Priscilla out of the snow and cold if we went anywhere in the winter, I’d first have to back the car out, open the ramp, and bring her down it into the garage. Then I’d fold the ramp up again and slide it to one side so I could drive the car back in. That way we could do a warm and dry belt transfer from the wheelchair into the car seat. When we got to the parking lot at our destination, I’d typically have to pull out the snow shovel we kept in the trunk and shovel the snow away from the entire length of the passenger side of the car. That would allow me to get our “out and about” wheelchair from the trunk and pull it up to the side of Priscilla’s door, where we’d do another belt transfer to get her into it.  (We’d bought a second wheelchair, via Craig’s List, for outside use only, to keep the salt and dirt out of our house)

The entire process would have to be repeated to get her home, including more shoveling in the parking lot if it snowed while we were at our appointment. And more transfers were often required while at the appointments themselves, so that I would sometimes do ten of them on a single trip. This was simply exhausting for both of us and it could take  days to recover. So January was going to be a month of medical appointments and not much else.

Priscilla started with an “annual checkup” from the same nurse practitioner she’d seen to begin investigating her symptoms back in June 2012. A few days later she had a physical therapy evaluation from the therapist who’d done so much to help her walk better later that year. We could see the sadness in her eyes as she discovered how much strength Priscilla’s muscles had lost since then.

On the recommendation of a friend, we were going to see a new neurologist. Her office was just down the road from us at the Michigan State University Clinical Center. She ordered a brain MRI in advance of Priscilla’s first appointment, also to be done at the center, and that test was our third outing of the month.

The Michigan State University Clinical Center
The Michigan State University Clinical Center

Between the MRI and the appointment, we received a letter from some friends who didn’t know that we’d resumed our pursuit of a diagnosis. They explained that they’d spent some time over the Christmas holidays praying about their giving and that God had put us strongly on their hearts. They enclosed a very generous check that would essentially cover Priscilla’s deductible and out-of-pocket expenses for the entire year. This gave us great peace of mind and allowed us to focus on the medical investigation itself, without wondering how to pay for it.

When we saw the neurologist, she explained that Priscilla’s brain MRI was essentially unchanged from a year and a half before, despite the significant advance in her symptoms. This virtually ruled out MS.  The doctor suspected that something “neuromuscular” was responsible instead—something like ALS. Priscilla’s “presentation” was much closer to the typical one for primary progressive MS (starting in the legs and moving up, with the weakness beginning on one side and spreading to the other) than to “classic” ALS (moving from the outside in, that is, starting in the hands and feet and moving symmetrically towards the core of the body). But maybe she had ALS with an unusual presentation.

The neurologist ordered a spinal MRI, just to be certain, and said she would review the EMG that had been done at the University of Michigan. But she felt that Priscilla really should have another EMG, since that one was over a year old.

As you can imagine, Priscilla was not keen on the idea of a third round of “medieval torture.” If she really did have ALS, then she’d gotten two false negatives from this test already. What was to say she wouldn’t get a third false negative, and go through the excruciating pain again for nothing?

The neurologist told us about a colleague of hers on the Michigan State medical faculty, a certain Dr. A (I’ll call him). He was a nationally respected authority in electrodiagnostics—an examiner of candidates for certification in the field and a director of its governing board. “I would have only him do the test,” she promised. Priscilla said she would think about it.

When the spinal MRI was performed, it showed no change, either. If we wanted to continue pursuing a diagnosis, the path led straight through another EMG. We talked about this at length and finally concluded that if it was basically a tossup between two untreatable fatal conditions, MS or ALS, then it didn’t really matter which one Priscilla had. The bottom line was the same.  We contacted the neurologist and told her that she wanted to forgo any further testing (particularly an EMG) and transition from diagnosis-and-treatment efforts into palliative care. Maybe we’d never find out what she had, but at this point simply caring for her was enough of a challenge that we could hardly spare the time and energy for much further investigation.

We didn’t realize that she’d have her diagnosis in less than a week.

To be continued.

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