MS Patient, Ph.D.: Greetings From Limbo Land
Patients traveling the PPMS diagnostic path often simply move from one part of limbo land to another
One morning last week, I woke up to this question in my inbox courtesy of a multiple sclerosis (MS) information site that emails me frequently: "Is your MS treatment working?"
As a (possible) member of the most confusing subgroup of MS diagnoses, I had to laugh and then honestly respond, "What treatment?"
Clinicians know that primary progressive MS (PPMS) is currently without treatment, but patients are even more acutely aware. On MS patient boards, all of the patients with relapsing-remitting MS (with a smattering of secondary-progressive MS folks) chat and give tips about disease-modifying therapies—how to handle this reaction, what questions to ask about switching, how hard is it to do injections, the evolution of their brain magnetic resonance images—while the PPMSers sit on the sidelines. It's like we're all in the same boat, but some of us have to watch everyone else sort out the limited treasures.
We feel that frustration, and yes, patients on these boards make jokes (complain?) about being the red-headed stepchild of the MS research world. And it's not just because of the absence of therapies. It's also how we get to the diagnosis in the first place. First of all, we're weird, but we don't know it when we first see a neurologist for that uncooperative foot or decreasing endurance while ambulating or that weird buzz when we bend our necks. We often present with a fairly vague suite of myelopathy signs and symptoms rather than the fireworks of sudden vision impairment or a discrete bout of arm weakness or drop foot. Instead, our problems are subtle, insidious, spinal, and, it often seems, suspicious. A frequent complaint on patient forums that is especially common among patients with PPMS is that before they received a diagnosis, they heard instead that they were anxious, depressed, somaticizing, magnifying symptoms, or manifesting conversion disorder.
It probably doesn't help that we also tend to be old—a decade older at least than your average patient with MS, and sometimes more. For years, it didn't help that few researchers and clinicians seemed to realize that these two forms of MS might differ substantially and that relying on the same clinical findings or similar findings to diagnose both was doing at least one of these groups a disfavor. Under one of the recent set of guidelines, I've seen patients told that they don't have MS because they had, say, a half-dozen brain lesions and a single spinal cord lesion, their symptoms and the limitations of 1.5-T magnetic resonance imaging, radiology readings, and interpretations notwithstanding. And thanks to the fact that enhancing lesions and changes on MRI are less common in the PPMS population, we all get to wait at least a year as symptoms progress before anyone can pay serious attention to us. For some PPMSers, diagnosis can take a decade or more.
And then, when it comes, there's still nothing for us.
Patients with MS call the lag from our awareness that something's not right to a diagnosis "limbo land." It's an especially strange feeling to be in this land, aware that your possible or likely diagnosis is PPMS but knowing that even if that's confirmed, that simply puts you in another version of limbo. Patients wrestle with this issue of wanting a label, because we're human and we want a name for things, while knowing that the label is essentially without practical application and basically means that each year, you'll slide through a giant magnet, be told where the white spots are (again), and sent on your way for another annum.
I expect to dig into these issues and more in my posts for this blog, and I look forward to comments from readers. I have a lot to say from the patient side of things when it comes to this journey along the PPMS diagnostic path, and you can expect some very personal postings from me, along with interpretations of research and, well, I can't yet say "treatments," can I?