I should be dancing on the ceiling. I’ve just received a stellar MRI report.

Though the number of lesions in my cerebrum has increased from 6-7 to 9-10 in the 14 years since my first (and only) scan, two key lesions in my corpus callosum and in my cerebellum have disappeared, according to the report. And I have no lesions in my brain stem or on my spine.

Nor are there many signs of brain atrophy. My ventricles are not enlarged and there are no black holes.

It was, without question, a terrific report. SO good, in fact, that my neurologist remarked, “It’s less suggestive of MS than your first MRI.”

Hold on. Say WHAT???


“Would you have diagnosed me with MS based on the findings in this new report?” I asked.

“I might have done a lumbar puncture to confirm it,” he said.

My diagnosis had been based on my medical history, a clinical exam, some blood tests, and an MRI. No additional testing was done. Now, I wondered: had he been thorough enough?

“Let’s have a look at the images,” he said. He scrolled through the pictures quickly, clearly hunting for something. And then he found it, freezing on an image, with an “Ah, there it is!” A lesion in my corpus callosum, apparently, that he believed the radiologist had missed. I tried my best to see it, but I couldn’t make it out.

In his mind, this discovery confirmed his diagnosis. In mine, it just raised doubts.

Was the report wrong or more accurate than his assessment? Was he really seeing something or just covering himself? Do I actually have MS? Or is it something else?

What questions to be asking yourself after being under someone’s care for 14 years and sticking yourself with needles every day! It was certainly not the conversation I expected to be having when I walked into his office that day.

My neurologist is old-school and doesn’t believe in doing regular MRIs, unless “there’s significant change.” And I’d been relatively stable over the years. But some of my symptoms had been gradually worsening, and given my age (55) and duration of disease (more than 20 years from the onset of symptoms), he thought I might be transitioning to secondary-progressive MS. That would mean stopping my Copaxone treatment, as none of the disease-modifying therapies currently on the market are effective for non-relapsing, secondary-progressive MS. This MRI was supposed to provide us with information to assist us in making that decision.

Not confuse me even more!

Needless to say, I’ve asked for a second opinion from an MS specialist – which had always been my intention if he recommended stopping treatment. And he did. (“You’re not actively relapsing, the disease is in a progressive course, and there is no benefit to being on Copaxone at this point.”) But now, I have an even more pressing need for another pair of eyes to look over my case. And I’ll be pushing all of my concerns about progression and treatment aside to pose the one burning question that I NEVER imagined I’d be asking at this stage of my illness: