If you have multiple sclerosis (MS), you probably know which of the four types you have: Clinically isolated syndrome, relapsing-remitting MS, secondary progressive MS, or primary progressive MS. Regardless, you might not know exactly what “progression” of the disease means, and how—or if—you might be able to do something to help halt that progression. According to the National Multiple Sclerosis (MS) Society, MS is a highly individualized condition (meaning every person experiences their own disease course), so there’s no one way to determine how (or when) one person’s disease might change. Still, by understanding the principles of progression with MS, you’ll be better equipped to know what to keep an eye out for.
How Does MS Progress?
How and why MS progresses is currently a subject of intense ongoing research in the field of MS, points out Achillefs Ntranos, M.D., the chief neurologist at Treat MS in Scarsdale, NY, who specializes in MS and other demyelinating diseases. What researchers currently know: For those with clinically isolated syndrome (CIS) (meaning, a first episode of neurologic symptoms) and magnetic resonance imaging (MRI)-detected brain lesions, there’s a 60% to 80% chance of a second neurologic event and diagnosis of MS within several years. Starting treatment with disease-modifying therapies (DMT) immediately after a first episode can prevent or delay that second neurologic episode, the onset of MS, and damage from related inflammation.
RRMS Progression
About 85% of MS patients are initially diagnosed with relapsing-remitting MS (or RRMS). RRMS is characterized by periods of partial or complete recovery, followed by relapses of symptoms. In other words, there are times when your condition is active and/or worsening—meaning you experience relapses and/or have evidence of new MRI activity over a period of time—and times when it’s not. The terms “relapsing and remitting” help explain the concept of changing disease and disability beyond the word “progression,” experts say.
RRMS involves inflammatory attacks on myelin, the insulation for the nerve fibers in the central nervous system, which might help explain progression in this type of MS, Dr. Ntranos explains. “The current belief is that chronic inflammation that lingers in the brain and spinal cord of MS patients can create a toxic environment for the neurons, which leads to their demise,” he says. “This loss of neurons is responsible for the slow worsening of symptoms that is clinically evident in the progressive phases of disease.”
RRMS to SPMS Progression
It’s possible for people with RRMS to develop secondary progressive MS. As the name suggests, secondary progressive MS (SPMS) is the progressive phase of MS. Estimates of how many people with RRMS progress to SPMS vary. Before DMTs came into the picture in the 1990s, studies found that an estimated 50% of those diagnosed with RRMS would transition to SPMS within 10 years, and 90% would transition within 25 years. But new medication has helped to slow progression and a recent study found only 25% of patients with RRMS had progressed to SPMS 10 years after their diagnosis (and 50% after 20 years). According to the National MS Society, the transition from RRMS to SPMS typically happens in people who’ve had RRMS for at least 10 years.
During the SPMS stage of MS, patients may still have relapses caused by inflammation, but the disease course changes from an inflammatory process in RRMS to a steadily progressive phase, involving nerve damage or loss. For standalone primary progressive MS (PPMS), neurologic function starts worsening from the initial diagnosis and patients usually don’t experience early relapses or remissions.
Why these progressive MS types occur is still not fully understood. “People think that the mechanism of progression, what causes nerve damage and nerve dysfunction, is a little different than with relapsing-remitting,” explains Barbara S. Giesser, M.D., a neurologist and MS specialist at Pacific Neuroscience Institute at Providence Saint John’s Health Center in Santa Monica, CA. “Relapsing-remitting is primarily inflammatory. There is inflammation involved in progressive disease, but to a lesser extent, and the immune
processes may be a little different. The other thing that may drive progression has to do with damaged nerves which have to work harder and are vulnerable because their myelin is stripped away. We think there are processes relating to oxidative stress and mitochondrial function” that may contribute to progression.
How Do You Know if MS is Progressing?
It’s not always easy to tell if your multiple sclerosis is progressing. Usually, your doctor will monitor your symptoms over a six-month period, to determine if your disease course is changing—but it might require one to two years to get a full picture. Ironically, the hallmark of progression is slow and gradual worsening disease, so identifying it can be a challenge in itself. One way your doctor can track your MS progression is a measure called “no evidence of disease activity,” or NEDA. This includes an absence of:
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Relapses
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Disability progression
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MRI activity
Many MS specialists use something called an Expanded Disability Status Scale (EDSS) to help them determine disability progression, says Yasir N. Jassam, M.D., a neurologist and director of the Multiple Sclerosis & Neuroimmunology Program in Hoag’s Pickup Family Neurosciences Institute in Newport Beach, CA. This scale looks at measurements of impairment in eight functional systems including:
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Muscle weakness
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Loss of balance
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Swallowing
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Numbness
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Bowel and bladder function
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Vision issues
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Thinking and memory problems
Another component of NEDA involves evaluating brain volume loss, says Dr. Jassam. “When you lose brain volume, you’re losing cognitive capacity,” he explains. “And that’s a form of progression as well.”
Does Sticking to Treatment Help Slow MS Progression?
Recently approved medications, including Ocrevus (ocrelizumab), Kesimpta (ofatumumab), and Mayzent (siponimod) not only prevent new inflammation, they can also slow down the progression of symptoms that MS patients can experience, Dr. Ntranos says. That said, always consult your doctor about new therapies, because they may or may not be right for your individual situation.
“All current MS treatments are designed to stop new disease activity in the central nervous system,” Dr. Nntranos says. “They can prevent the accumulation of lingering inflammation in the brain and spinal cord that could cause progression in the later stages of MS. So starting an MS treatment as early as possible is the best way to prevent the progression of disease.”
Smoking and MS Progression
Among the lifestyle habits that may factor into progression of multiple sclerosis, smoking s a big one, Dr. Giesser says. Extensive research has found a “clear negative relationship between smoking and overall MS disease course,” according to the Cleveland Clinic.
In MS patients, smoking has been associated with:
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Increased MS lesion volume
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Active brain lesions
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Higher risk of brain atrophy
“Smoking is the most important modifiable risk factor for MS progression,” adds Dr. Ntranos. “It has detrimental effects on your health in general and can also make MS worse. The myriad of chemicals that enter the body upon cigarette smoke inhalation can increase chronic inflammation, promote oxidative stress, and introduce toxins that can directly cause damage in the brain and spinal cord.” A smoking cessation plan is vital if you have MS and currently smoke.
Lifestyle Factors and MS Progression
In terms of MS progression and other modifiable factors, the evidence isn’t as clear, Dr. Giesser says. We know lifestyle factors such as eating a healthy diet, maintaining a healthy gut microbiome, exercising regularly, and taking vitamin D are helpful for our overall health. Some, like exercise, can help with MS symptoms, prevent complications, and possibly be neuroprotective. (Also, research shows that people with higher vitamin D levels may have a lower risk of relapse, compared to people with lower vitamin D levels, who often experience higher levels of disability measured by the EDSS.)
But for MS progression specifically and evidence-based data, the jury is still out for many lifestyle changes beyond smoking. The one factor that can almost certainly provide benefits is getting seven to eight hours of sleep a night, Dr. Ntranos says. “Sleep is essential to restore our energy levels and promote a healthy brain homeostasis,” he says. “In animal studies, lack of sleep has been shown to increase inflammation in the central nervous system, which could potentially have implications for our MS patients.” The research around sleep and its effect on MS progression is insufficient at present. And multiple sclerosis itself comes with sleep issues, with some 50% of those with the disease reporting sleep disturbance.
So if you have MS and you are trying to keep your condition from progressing, what’s the bottom line? “I always tell my patients that MS care is like a tripod,” says Dr. Jassam. “One leg is trying to stop the disease by medication. Another leg is the modifiable risk factors, such as your smoking, your diet, your vitamin D. And the third leg is symptom management, to improve the damage or the effects that MS has already had on you.” Continue tending to all three legs, and you’ll improve your chances of keeping MS at bay.
By: HealthCentral
