Are the MS Stages Still Useful in a Diagnosis?
Why columnist Ed Tobias believes in doing away with the current stages
What’s in a name? Does it really matter if your multiple sclerosis (MS) is called relapsing or progressive, or secondary rather than primary? I’ve never thought so, and the International Advisory Committee on Clinical Trials in MS agrees with me.
The panel is calling for new methods to classify MS — methods that reflect the disease’s underlying biology, rather than differences in clinical presentation, and view MS as a continuum, rather than distinct stages.
The 4 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 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.
Are stages still relevant?
No matter how you classify it, MS will progress. So does it really matter what it’s 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.
In a personal view study published in The Lancet Neurology, 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 effective 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.
You’re invited to visit my personal blog at www.themswire.com.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Rosanne Costain
I still like the classifications. Gives me information to consider the abilities and potential needs of other people. I was deemed secondary progressive, my daughters half brother primary progressive, it told her that her brother was in a position to need more assistance than me - and that's okay by me.
Ed Tobias
That's something I hadn't thought of, Rosanne. Thanks for the comment.
Ed
Marie Morell, Ph.D.
Labelling MS “stages” or types is most informative during consultations between doctor and patient, in my opinion. Yes, the danger of formal labels is potentially severely limiting doctors choices of medications because of rigid insurance (I.e., payment coverage). After more than 40 years my MS has progressed without relapses in 20 years. Technically, without active disease I was not eligible to use ocravus. Fortunately, my university neurologist initiated what he calls aggressive treatment using ocravus.
I have read your informative information for some time now. Thank you!
Ed Tobias
Hi Marie,
Thanks for your comments and I'm glad your neuro was able to get your Ocrevus treatments approved. I'm also glad you think what I write has been useful to you. That means a lot to me.
Ed
Kenneth Westrick
I think 'categories', 'classification', or more simply 'classes' may be more appropriate than 'stages', as stages is often thought of in a temporal sense. For me I often think of the 'stage' from an EDSS perspective, and how my MS has progressed to the next stage of severity. Having PPMS I actually think that these four classifications of MS need more separation, from both a symptom and treatment perspective. I'm very different from my sister, who has RRMS, and one of the reasons that I've avoided *some* MS help groups is that a vast majority of those attending have RRMS, and while we can lament about some - often few - shared symptoms the discussion is often on topics such as treatment and outcomes, and often those are worlds apart.
Ed Tobias
Hi Kenneth,
Thanks for your comments. Based upon what you've written, I wonder if just describing MS by someone's EDSS level, or another more encompassing measurement, would be more objective than the four current stages. We certainly know when we move from one EDSS description to another, though we rarely know when we move from RRMS to SPMS.
Ed