Life with a progressive disease can be challenging for anyone, even the most prepared.
Not knowing what the future holds can make for unnecessary stress.
Add to that a lack of approved therapies, and someone with the disease could lose hope.
But doctors and researchers, in a range of studies, are beginning to find answers to these issues for people with progressive multiple sclerosis (MS).
Understanding who will develop progression with the disease is a big part of MS treatment.
Stopping the progression is key to slowing or stopping neurological damage, and early treatment leads to a better chance of living well with MS.
While there are no drugs approved by the Food and Drug Administration (FDA) for progressive MS, one medication is expected to get FDA approval late this month.
Ocrelizumab is considered a breakthrough in the treatment of progressive MS. Study participants showed lower rates of clinical progression — meaning their symptoms appeared improved after receiving the drug. Also, the number of lesions showing up on MRI were fewer.
In a recent study, researchers report they found a way for early diagnosis of MS in the progressive category.
In a group of 155 people ages 50 and older, 30 percent progressed to secondary progressive MS by the five-year mark of the study.
The two things in common with all those who progressed? Fatigue and weak or spasmodic legs.
“Study participants with those symptoms were more likely to progress from relapsing-remitting MS to secondary progressive MS within five years,” said study author Dr. Bianca Weinstock-Guttman, of the Jacobs School of Medicine and Biomedical Sciences at the University of Buffalo in New York, and a member of the American Academy of Neurology. “Better understanding who is at high risk of getting worse may eventually allow us to tailor more specific treatments to these people.”
Both fatigue and leg issues can be common for people with MS. Excessive fatigue is considered the most disabling symptom. It occurs in 80 percent of people with MS, according to the National Multiple Sclerosis Society.
In addition, fatigue can lead to exacerbated symptoms such as poor cognitive function. Cog-fog, as it is often called, causes issues with information processing speed, attention, motor function, and memory.
There are not a lot of effective treatments for fatigue, especially without strong side effects. However, researchers are not giving up.
In a recent study, researchers looked at the efficacy of a personalized neuromodulation treatment, basically a form of electroconvulsive therapy (ECT). The study suggested that interventions could help relieve debilitating symptoms by targeting key areas of the brain.
According to the National Multiple Sclerosis Society, “[Fatigue] can significantly interfere with a person’s ability to function at home and work, and is one of the primary causes of early departure from the workforce.”
Seeking the cause
While the industry has seen many improvements for relapsing MS there have been little for those with progressive MS.
This is changing as doctors and researchers find success in their studies of progression, what causes it, and how to stop it.
Along with fatigue and spasmodic legs, biomarkers continue to be tested for use in understanding progression.
The cause of progression is not known, but recent studies continue to unveil interesting conclusions.
North Africans in France progressed significantly faster than Caucasian people with MS.
In Ireland, the typical person with MS is age 54 and older. There was a preponderance of men and a greater number of people with motor onset compared with other subgroups of people with MS.
The increasing number of successful studies looking into progressive MS is hopeful, experts say.
“While more research needs to be done, this study brings us closer to understanding which older adults with MS may be at higher risk of getting worse,” said Weinstock-Guttman.
Editor’s Note: Caroline Craven is a patient expert living with MS. Her award winning blog isGirlwithMS.com, and she can be found @thegirlwithms.