There are a lot of different ways to describe secondary progressive multiple sclerosis (SPMS). A good bit of those descriptions is medical jargon about “non-inflammatory disease,” “MRI activity with or without progression,” and “progression with or without MRI activity.” Head spinning, yet?
No doubt, it can all be a bit daunting to someone just diagnosed as having moved beyond the relapsing-remitting (RRMS) phase of MS and into a more progressive form of the disease, which is characterized by the onset of new symptoms, the worsening of existing ones, and the accumulation of disability with few-to-no periods of remission. It's a stage that most people with MS will eventually reach, though no one knows exactly when, according to the National MS Society. I've been living with SPMS for about 18 years, and here are few things that have helped me make sense of what this condition means.
How You Get to SPMS
In order to take some of the sting out of SPMS, think of it as chapter three of your multiple-sclerosis story.
The first chapter is called Clinically Isolated Syndrome (CIS), and it's not one that everyone with RRMS knowingly experiences. CIS is the first episode of demyelination–the condition created when an abnormal immune-system response strips the protective coating from nerves in the central nervous system–that can be identified both clinically and on MRI. Everyone with MS has a CIS, like optic neuritis (inflammation of the optic nerve), for example. But not everyone with MS catches the first one because not all lesions cause clinical symptoms we recognize. And to add even more ambiguity to the mix, not everyone who experiences CIS will go on to develop MS.
Chapter two of MS is relapsing-remitting multiple sclerosis (RRMS). This is the stage about which the most people have some level of understanding, probably because about 85% of people first diagnosed with MS are in this phase, according to the MS International Foundation. This is the time of good and bad days, of come-and-go attacks. Sometimes we return to baseline after an attack, sometimes we are left with lingering effects that don’t go away.
We can be in this stage for years and years, which is why the exact transition between RRMS and SPMS is often difficult to pinpoint. There tends to be a lot of overlap. People with SPMS can still exhibit periods of “relapse without progression,” which means that they return to a baseline and then continue to accumulate symptoms later on. There can also be periods early in SPMS when the progression of disability without relapse may go unnoticed by both patient and physician. The changes can be so gradual that you adapt without even realize you're doing it. If that’s you, give yourself credit for meeting the challenges before they were given a name by doctors.
How Things Will Change
The words may be the same, but they get arranged in a way that creates a unique story. And, while RRMS is more a story that you might pick up and put down over a period; SPMS is, unfortunately, more of a book that won’t let you put it down.
Some say that while RRMS was a bit frightening because of the unknowns, SPMS is more frustrating than it is scary. There are fewer abrupt changes in ability; it's more of a slow slipping away.
These very gradual changes can show up in clinical visits to your MS specialist in ways that might not have been the case before.
SPMS visits to the clinic are now more about seeing where you are compared to the last exam. The neurological exam will be the same you are used to having, but you and your doctor may likely notice additional symptoms or worsening of old ones even though you haven't had an attack since your last visit. Unlike during RRMS, we don’t usually bounce back from the accumulating progression of symptoms and associated disability.
What's more, your MRI scans might even appear to be stable, showing no new lesions. “In contrast to the important role of MRI in diagnosing and monitoring relapsing MS, MRI falls on its face when it comes to secondary progressive MS,” says Robert Fox, M.D., a neurologist at Mellen Center for Multiple Sclerosis at Cleveland Clinic in Ohio. “The problem is that there is no MRI sign or signature for progressive MS. Progressive MS occurs for reasons that the MRI doesn’t capture. Imagers are trying to develop ways to harness MRI to capture the progressive aspects of MS, but it’s just not there, yet.”
And just to keep things interesting, you may get new lesions and have attacks, as well as show progression. That’s the thing about SPMS, everyone’s book reads a little differently.
How to Maintain and Monitor at Home
While we may not recover as much or as far as SPMS progresses, the more mental and physical strength we start with in the beginning, the better off we’ll be as we make our way through the pages of our MS saga. Some advice that's working for me and others in the SPMS community:
Write it out. As most of us see our MS medical team once every 6 to 12 months (longer for those living quite far from their MS specialists), it might be a good idea to keep some sort of journal to compare like-for-like at regular intervals.
Play gin rummy. Or, play any card game every week with a friend or family member so you can judge your cognition (making sense of a hand), dexterity (shuffling), and fine-motor skills (drawing and discarding) from one week to the next.
Track your finger dexterity. Some people get home versions of the 9-hole peg board test, which doctors and occupational therapists use to measure finger dexterity, so they can keep track of their abilities at home and report the outcomes to their MS docs. Others will keep track of daily activities at regular points in time (monthly or semi-annually is a good way to start) in order to gauge their place on their own personal MS ability scale.
Pump some iron. Often the legs are heavily impacted by MS by the time we progress to SPMS. This means that the use, maintenance, and monitoring of our upper limb abilities is of upmost importance. In fact, according to MS specialist Gavin Giovannoni, Ph.D., a professor of neurology at Barts and The London School of Medicine and Dentistry, the arms are the legs for a person who has lost the use of their legs. Physical and occupational therapists can help devise a program to get and keep your arms in shape for what SPMS may bring. Get them strong if they are not. Keep them strong if you can.