What’s in a name? Does it really matter if your MS is called relapsing or progressive, or secondary rather than primary? I’ve never thought so, and it seems as if the International Advisory Committee on Clinical Trials in MS agrees with me.
In recommendations published in The Lancet Neurology, the panel calls for new methods to classify MS — methods that reflect the disease’s underlying biology, rather than differences in its clinical presentation. The panel suggests viewing MS as a continuum, rather than an illness with distinct stages.
The four MS stages
Like about 85% of people with MS, I was diagnosed with relapsing-remitting MS (RRMS), now frequently called just relapsing MS. Attacks of symptoms are followed by periods of partial or complete recovery.
After several years, many of these people will go on to develop secondary progressive MS (SPMS). Their symptoms will gradually worsen, even if they’re not experiencing what can be defined as a relapse. That change happened to me about 20 years after my diagnosis.
A small number of MS patients will be diagnosed with primary progressive MS (PPMS), where symptoms gradually worsen right from the start.
Recently, a fourth MS stage was added to the list: clinically isolated syndrome. This diagnosis is used when someone doesn’t quite meet the requirements for an MS diagnosis, but their symptoms sure look like MS.
Is what your MS is called still relevant?
No matter how you classify it, MS will progress. So does it really matter what your MS is called? Some people diagnosed with RRMS will be labeled that way long after their symptoms worsen. On the other hand, some people with progressive types of MS also experience some relapse activity.
The International Advisory Committee on Clinical Trials in MS suggests that MS be viewed as a disease that is influenced and driven by ongoing processes, rather than one that moves in stages. There may be times of acute inflammation that spark a relapse, and there may also be gradual degeneration of the nervous system without relapses. Simple. Why label these?
Who cares?
The stumbling block to doing away with the MS stages seems to be the government agencies who approve our MS medications and the insurance companies, or the government health services, that pay for them.
For example, Ocrevus (ocrelizumab) is the only disease-modifying therapy (DMT) approved by the U.S. Food and Drug Administration to treat PPMS. So insurance companies are unlikely to approve Lemtrada (alemtuzumab) to treat a PPMS patient, even if it may be an effective treatment for them.
I suspect my insurance wouldn’t have covered the cost of some of the DMTs I was treated with, had my diagnosis been listed as SPMS — even though it was obvious to me that my MS had moved from RRMS to SPMS.
Who cares if we do away with labeling MS stages? The international advisory committee does. I do. And I think you might, too.
(A version of this post first appeared as my column on the MS News Today website.)
(Featured image by vjohns1580 from Pixabay.)
