Diagnosis based on symptoms
Like other forms of MS — including RRMS and primary-progressive MS, in which symptoms immediately worsen without relapses — SPMS is defined by the pattern of symptoms, rather than by diagnostic tests.
No MRI [magnetic resonance imaging] Or the blood test we use to diagnose secondary progressive MS. Perumal, MD, associate professor of clinical neuroscience at Weill Cornell Medicine in New York City, “It’s the cycle of the patient’s disease.”
Dr. Perumal says the most common early indications of SPMS are progressive problems with gait (gait), loss of stamina, or cognitive difficulty.
“Things kind of creep in, and they’re here to stay,” she says. “They don’t come on suddenly, the way a relapse does.”
This gradual onset of symptoms means that it can be difficult to pinpoint exactly when SPMS begins. Perumal notes that if a doctor has been seeing a patient for some time, it may be easier to subtly notice when symptoms begin to worsen — but any doctor can listen to the patient’s perception of how symptoms have changed over the years.
There’s no typical point in time when SPMS begins, Perumal says, but it often comes early in people with aggressive disease—meaning they experience severe symptoms during relapses, or experience them more often.
In contrast, if someone has mild disease, “you may not notice the shift as much,” says Perumal—and in fact, people with milder MS can remain stable for years without relapses or noticeable worsening of symptoms.
But Perumal cautions against complacency during periods of stabilization of symptoms. “Things will still happen on an MRI,” she says. “Not every lesion translates into symptoms.” This means that it is still important to continue with your prescribed treatment.
For Ardra: fuzzy transition from RRMS to SPMS
The transition from RRMS to SPMS has been a blur for Toronto resident Ardra Sheppard, who was diagnosed with MS in her early 20s. She commented about living with MS on her blog, Tripping on Air.
“It’s not like they’re giving you some kind of testimony,” she says. “It’s more of a note that you can only do after the fact.”
For Sheppard, early MS symptoms included vision loss, hearing loss, numbness, and paralysis — dramatic changes that happen suddenly during relapses. It took weeks or even months to recover from these attacks, after which it wasn’t quite “normal” anymore.
“Every time there was a new attack, I took more damage,” she says. This included vision that mostly returned, but not to the point where she could drive a car, and walking that seemed normal until she got to a certain distance, after which her foot started to fall off.
After a certain period of time, “you look and see that you don’t have the same kind of relapses, there are no new lesions on the MRI, but certain symptoms that get progressively worse,” Sheppard says of progressive SPMS.
For Doug: Steady rejection from day one
The beginning of SPMS was very different for Doug Ankerman, an Ohio resident who was diagnosed with MS in 1996 and worked as a radio copywriter until 2009. A stand-up comedian, he attempts to inject humor into his experience of MS into his blog. Odd sock.
“I’ve been on a steady decline, I think, from about day one,” Ankerman says, though he feels lately that he’s leveled off.
“Thinking back, I may have had one relapse, and did two cycles of steroids,” he says.
Ankerman has problems with his gait as well as spasticity, takes baclofen every day and receives Botox (onabotulinumtoxin A) injections into his legs every three months.
He’d been on disease-modifying therapies (DMTs) for his MS on and off over the years, and I’ve seen his symptoms worsen no matter what, if anything, he was taking.
In addition to seeing his progress on timed gait tests at his doctor’s office, “I can tell in my daily life by my balance,” he says. “Some days I have to stop walking up and down my driveway. I think, ‘Gee, I could do that six months ago.’”
But Ankerman says he works hard at fighting MS with daily exercise and stretching several times a day.
“Move it or lose it,” he says, “is an aphorism that’s used a lot but it’s so true — especially with MS.”
Develop treatment strategies for SPMS
According to Perumal, the disease mechanism underlying the change from RRMS to SPMS is not well understood.
In RRMS, circulating inflammatory cells appear to cross the blood-brain barrier and attack neurons, leading to lesions and relapses. Perumal points out that, according to the latest research, SPMS may result from inflammatory cells that have taken up residence in the brain, or from the loss of neurons over time.
“If they take a lot of hit early in the disease, this kind of neuron loss will be more noticeable,” she says.
Currently, there are no effective treatments to repair or replace damaged or lost neurons in MS. This means it’s especially important to try to control the disease in its early stages, when currently available medications are most effective, says Perumal.
“If we preserve or prevent the neurons from having these frequent attacks, maybe when patients reach the secondary progressive stage it won’t be as bad as it could have been,” she says.
Once a person is in the secondary-progressive stage, Perumal says, it’s standard practice to continue treatment for MS and switch to more aggressive treatment if symptoms worsen. This may help reduce new infections or lesions, but it will not reverse long-term damage or associated symptoms.
Disease-modifying therapies (DMTs) effectively slow the progression of MS-induced disability and reduce the frequency and severity of acute attacks in people with RRMS and active SPMS. They also reduce the development of new lesions. DMTs may change or delay the transition to SPMS, but it’s too early to tell, NMSS adds.
Mitoxantrone (Novantrone) was the first drug approved for use in people with SPMS. But since 2019, several other medications have been approved for active SPMS.
Symptoms can be treated, even when the underlying disease is not possible
Perumal stresses that even if you’ve been diagnosed with SPMS, you don’t have to accept living with all of your symptoms.
“There are many medications that help with walking, help with spasticity, and help with bladder symptoms. You should still talk to your doctor about your symptoms,” she says.
To make the most of your appointments when you have SPMS, Perumal recommends making a list of topics to discuss, starting with the symptoms that bother you the most.
This is a reference to the fact that treating the symptoms of MS, rather than the underlying disease, involves a piecemeal approach.
When someone has multiple symptoms, “we can’t do something for all of those things in one visit,” Perumal notes. “It’s trial and error, and it’s a step-by-step process.”