MS Patient, Ph.D.: That’s Not PPMS? Well, It’s My PPMS
Consider individual differences in disease manifestation before dismissing a symptom as unrelated to MS
As I mentioned in my previous post, I’ve seen many neurologists. Not because of “doctor shopping”—we patients know how suspicious MDs are of that behavior—but because of referrals (and more referrals) and from residing in three states in recent years. My experiences with these different neurologists have been, shall we say, varied in terms of outcome. One thing that characterizes a few of the encounters is the limited real-world knowledge about PPMS that seems to be available to many specialists.
The reasons for these limitations are obvious. The PPMS patient population is a relatively small one, a group of people with a condition that develops very slowly over time, doesn’t present in a way that’s perceived as “classic” for MS, and can be conflated with several other disorders. It has no treatment. Patients are older and frequently dismissed as experiencing “aging” (often as otherwise healthy people in our late 30s or early 40s). The imaging markers for it are less pronounced than for RRMS, and the onset is slow, insidious, and difficult to observe. Given that only 10% to 15% of people with MS have PPMS and perhaps 400,000 people in the U.S. have MS, that leaves around 50,000 PPMS patients or so in the United States. This country has just over 16,000 neurologists, for an average of about three PPMS patients per neurologist compared to more than 20 with RRMS.
Obviously, each neurologist’s mileage varies, and those who specialize in MS will see more while some neurologists may never encounter a PPMS patient. But as any MD knows, experience matters to the art of medicine as much as education does. My experience as a patient has been that neurologists in general have a rather constrained idea about what PPMS is and means for the person who has it.
Because of the dual sensorimotor aspects and idiosyncratic lesion patterns of a neurological disorder like MS, one key feature must definitively be its variability from patient to patient. No two of us have an identical sensory experience, and with a disease that affects sensory input so powerfully, how we detect and feel the misfires of our nervous system will be highly variable. In the absence of total paralysis, our motor manifestations will also vary in intensity and timing. To me, as someone who teaches human physiology and developmental biology, these features seem to be a given consequence of the unique packs of neurons and hormones that each of us is. Yet, patients will hear, “That’s not PPMS” or “That’s not MS” about specific manifestations, although even the literature says otherwise—and if it didn’t, they’re still the patient’s manifestations.
Given this context, I thought it might be useful to discuss a couple of features of PPMS symptoms that patients report having been dismissed as not PPMS (or MS) related.
The first is pain. Obviously, a condition like trigeminal neuralgia is one that neurologists can readily recognize. Yet other forms of pain were once considered unrelated to multiple sclerosis, an impression that some specialists still seem to have. “MS isn’t associated with pain” is a frequent phrase that MS patients hear (and talk about on patient boards). It’s frustrating to have pain dismissed, which might be hard to fully understand unless you’ve experienced chronic pain, a hidden condition. Yes, pain involves factors of emotion and hormonal status, but it’s also a very real manifestation of physiological mechanisms for which some interventions are available.
MS patients can experience intense pain from general paresthesias—probably the one that’s dismissed most often, although I’ve had some so stabbing and sharp that they wake me at night—and also from phenomena like Lhermitte’s (another one of mine), spasticity (ditto), and mechanical pain from torqueing one’s alignment just to ambulate successfully (ditto). Although studies now indicate that about half of MS patients experience chronic pain, more often women than men (see hormonal status, above), some neurologists will still tell patients that pain isn’t associated with MS or will dismiss it altogether. Specialists might quibble about primary versus secondary phenomena here; although that can be relevant to the selected therapy, to a patient, that’s just academic and it’s all still MS.
The other primary erroneous assumption about PPMS is that symptoms are always present. In one sense, this is true, at least for me. I always have trouble getting into a standing position and initiating walking, usually have paresthesias, almost always have Lhermitte’s, always struggle with stairs. In another sense, though, the symptoms of PPMS can be variable in intensity from day to day, changing with heat, fatigue, hormone cycles, and infection. Patients with this condition can tell the listening neurologist that things like gait disturbance can be worse on some days than others and that the distance they can walk without experiencing increasing difficulty can also vary.
Yet one neurologist I saw asked me how long it took before my gait deteriorated while walking. I responded, “A few blocks.” In my context, that’s a huge deficit compared to the miles and miles I could walk only a few years ago without breaking stride. Her response, however, was “That’s not PPMS. With PPMS, your gait is always disturbed.”
First, that statement was dismissive of my lived experience with spinal lesions and the mounting deficits I’ve accrued in walking over the last few years. The thing is, my gait is always disturbed now. It just takes a few blocks for it to deteriorate even more, and that’s the question I was answering. The other thing, though, is that many PPMS patients will tell you if you ask them that it does take some period of ambulating before their walking difficulty sets in. As the U.K. MS Society notes in its patient booklet about PPMS: “Some people find their walking gets more difficult the further they walk, and they need to rest when their legs start to feel weaker. Over time (usually many years), this can develop into progressive stiffness and weakness of both legs.”
PPMS patients find each other and share their experiences online in ways that reveal patterns related to the PPMS patient experience. We know that not every twinge or symptom is necessarily MS-related, but we also know what shows up across the community as a commonality. Patients with experiences to share who can clarify what it’s like to live with PPMS are out there. The key is to listen to what we have to say.