Benign MS: Says Who?
Some of the terminology in Multiple Sclerosis bothers me a lot, particularly because we don’t have our own medical vocabulary and many of the words we use don’t clearly tell what the real story might be. From what I have heard in various talks by neurologists, many of the words we use in defining MS were borrowed from Cancer treatments back in the 1950’s and 60’s, when the criteria for MS was being developed because MS didn’t yet have its own language. I’m all for sharing, but in this case those words don’t often mean the same thing and can create confusion.
For example, Relapsing Remitting MS (RRMS) is the most common form of the disease and about 85% of us start out that way. Remission is a word used to indicate cancer has been quieted either through a complete or partial remission. In a partial remission, the cancer is not totally gone, but rather it has been quieted for a period of time. Unlike cancer's complete remission, it would be misleading to think that our MS ever truly goes into complete remission (remitting).
Lesion is another word that is often misunderstood and has many different meanings in the medical world. It can be a growth or abnormal area, and it often conjures up images of bumps and lumps and tumorous growths. Lesion is also what the area of demyelination in our nervous system is called. More than one person has asked if the doctors couldn’t just cut out my lesions. It would be more than nice if there was a different word that was specific to this demyelinating process. Any suggestions?
Occasionally a person’s MS is called ‘malignant,’ and I guess in the true sense of the word where a malignancy becomes progressively worse, that could be true. I don’t like the word malignant, because of the association with cancer and its usual outcome of death. In the literature about malignant Multiple Sclerosis, I find that doctors will name a person’s MS Malignant if it progresses quickly - often the benchmark is extreme disability within five years of diagnosis. The Social Security Administration added malignant MS to the short list of compassionate allowances, where the application is not questioned and full disability is awarded quickly because the persons’s health meets the criteria of full disability. I can live with the word malignant in the MS vocabulary if it means it helps expedite resources for people who are disabled with the disease.
The opposite of malignant in cancer is a word that is distressing to me to read in the context of Multiple Sclerosis – that word is BENIGN, which makes me think of warm puppies and cute kittens, gentle creatures that do no harm. But then you have people hearing their MS is benign, meaning it is so mild it will never cause damage. It makes me angry to read about patients being told their MS is benign and that they should just go on with their lives as if the words MS had never been uttered. If you go back to the idea of Relapsing/Remitting MS, you understand that periods of remission can last a short time but have been documented in some cases to last for decades. The point is we just don’t know when the sleeping MS will rear its ugly head and create havoc.
To deny a patient treatment for their MS because it is considered benign is one crap shoot – the roll of the dice of lady luck will determine how long our MS remains quiet. How many people have been diagnosed, and then decided to not treat their MS because they were back to feeling normal, resumed their regular routine and life, and then years later were hit with another relapse that left them with physical deficits? We really can’t know if our MS is truly benign until after our life is over and the pathologist can examine our brain.
The diagnosis of benign MS appears to have increased recently in many European countries, where medical authorities are under pressure to contain treatment costs; if a person is labeled with benign MS, they are then denied treatment with any of the disease modifying drugs. This cost containment effort, especially in the National Health System (NHS) of the United Kingdom, appears to overlook the long-term needs of the patients and focuses solely on the money being saved. Benign MS as a diagnosis is also used in the United States, but fortunately, much less frequently.
The National Multiple Sclerosis Society’s website clearly discusses benign MS and why that label should not be used. A large study (MAGNIMS) of benign MS in Europe, showed that even if there was not any obvious visible physical disability, up to 45% of the people who were studied showed cognitive impairment from their MS. Does that sound like something benign and warm and cuddly? It sure doesn’t to me.
With the advent of disease modifying drugs, there are many people who now live with their MS not progressing in a disabling way, thanks to early treatment. The consensus with the experts is people who display even the first early signs of possible MS called Clinically Isolated Syndrome (CIS), should begin treatment immediately and not leave their health to chance.
Bottom line – every person who is diagnosed, even if it appears mild, should be given the option to treat rather than being led to believe nothing bad will ever come from their MS. We deserve the option to roll the dice and challenge Lady Luck on our own terms and not because a doctor has called our condition benign. It’s time we develop MS specific words that better tell the story of MS and its treatment and eliminate benign from that medical vocabulary.
Who can relate? "Just because I could do something last year, last month, last week or yesterday doesn’t mean I can do it today. Also, it doesn’t mean I can’t."