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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • @masbrautigam
    4 years ago

    Thank you so much for this great story!!!i was diagnosed with inactive MS and frustrates me as I have many symptoms and pain.I was diagnosed in France,so typical to your story diagnosis in Europe.I am now in Australia since recently and wonder if benign will also pop up.Diagnosed with inactive and was told to live my life as it was very mild.Thats it!!3 yrs I basically ignored my MS and had no follow up until I got neuropathy pain.Again neurologist (French) said inactive don’t understand.second neurologist gave me medication,told me I had it for 20 yrs haha and its classed as stable.(?) stable??MS is unpredictable so??Being classed as inactive the neurologist in Europe don’t even want to see you!!!I suffer!!

  • Jaime
    4 years ago

    Thank you for your commentary regarding the term benign. This is something that angers me a lot as I consider my foggy brain, memory issues, anxiety, depression, and vision damage to be anything but harmless. This is a word that I feel needs to be eradicated from MS dialogue.

  • @masbrautigam
    4 years ago

    Totally agree!!!!

  • Gene
    6 years ago

    So very true. I was at a pre-op appointment at the hospital and the nurse giving me the physical was running through the battery of questions and when I mentioned that I have MS she took the appropriate notes. Asked me if I was on med’s and I gave her that information. Then she proceeded to ask me if my MS was in remission. Really? What kind of question is that? It’s Multiple Sclerosis not cancer! 🙂

  • Janice
    6 years ago

    Reading this article made me feel so weak because it finally addresses something I have been dealing with for 12 years. I had all the pre-MS symptoms from optic neuritis, mono, Epstein barr but it wasn’t until 10 years later when I had my first problem with dizziness, eyes jumping and cognitive problems that I got sent to a neurologist who diagnosed me with “benign MS.” This was a total shock to me because I had never heard much about MS and to be told I had it scared me. I decided that because it was benign that it would not be a problem. The neurologist said I shouldn’t start any drug therapy because the side effects would be worse than having benign MS. I had already started treatment for depression which I now think was related to my MS but I still lived in denial. I never had any physical problems so I never thought much about it. Ten years later when my eye doctor did a field vision test because of my MS history it showed a large area that I didn’t see. He had me do my first MRI in 10 years that showed that I did have MS-not benign. In the process I also found out I had glaucoma which was treated. Now I had to face the MS problem which I had never really accepted. After going to two different neurologists all I was told is that I should have been on drug therapy in the beginning and start on one now. I was more confused because what I read about the drug therapies was that you shouldn’t use them if you have depression. Because I didn’t feel like I was of much concern I didn’t start any therapy and didn’t go back to those neurologists. Because I am in a small country town now going to a neurologist means traveling to another city sometimes an hour away. Two years later still without physical problems but just having problems remembering things and learning new things which would make me frustrated and more depressed I decided to find another neurologist. This one again was an hour away but I felt like I got more personal attention and first had another MRI and blood work. This MRI showed my MS had progressed from the last MRI. Again the discussion of drug therapy came up and I should do it because of the progression. I gave in since it would be totally paid for (which would be a big problem for me) so I started on Rebif. I had no problems that were told may happen-flu like symptoms, etc. I did start noticing after being on the full dose for a month that I thought I was feeling more depressed. I kept going thinking maybe I just had to get used to it. After 4 months I had to stop because my depression was the worst it had ever been. During this time I was also referred to a neuro psychologist because my MRI had shown problems in areas that would be more cognitive. He found that I was moderate to severely depressed and I tested low in memory and my processing speed was low. Just reinforced my problem with depression and my cognitive issues – not physical. My neurologist didn’t have a problem with me stopping the Rebif and she said I should have another MRI in January which would be a year since my last one to see what my MS is doing and then talk about another drug therapy. I don’t trust any drug therapy from all I read about them and I know one person now that has MS and has tried all the drug therapies and has had to keep changing because they have made her feel worse when they are supposed to make her do better. I know that my cognition and processing speed will cause me problems everyday and as much as it frustrates me not to be able to do things I used to have no problem doing that it is the way it is and nothing will improve it but accepting the condition is what will work best for me. I have been in denial that driving was a problem because in this little country town traffic is not a problem but when I have been out going to another little town or to a bigger town where my neurologist I have gotten lost everytime and I have had some close calls on the way or back. I found out last week when I totally lost control of my car and could have ended every thing that it is time to take that more seriously. I came home and cried because denial is not the way and accepting things is depressing but that is would I have to face and deal with now.
    Reading this article about benign MS really was so what I have been dealing with and it is so hard to think what was supposed to be benign isn’t and no one can see what I go through in my head and cognitive research in MS is not a major issue right now.

  • @masbrautigam
    4 years ago

    So sorry.Zi had optis neurotis too and find this diagnosis wrong.

  • Pam
    6 years ago

    benign ms is what I was first dx’d with. no offer of treatment, what to do, a referral.. nothing! a co worker has a daughter with ms and suggested her neuro. I went to him and was told that he dosent believe in benign ms. and my mri’s look like I should be in a wheel chair. thankfully, i’m not,, but think I might be if i’d stayed with the first neuro. what a horrible thing to do to someone.

  • Laura Kolaczkowski author
    4 years ago

    Mascha, there is no crystal ball for doctors to use and they really don’t know if you will need to use a wheelchair until you physically get to that point. The statistics show most people with MS, if given the opportunity to take a disease modifying therapy early, will not progress to having to use a wheelchair in later years. -Laura

  • @masbrautigam
    4 years ago

    Can I ask what you did?How can they see if you would need to be in a wheelchair?i often wonder when for me?Although I am fine now

  • jfalasco
    6 years ago

    I think the term “benign” is a reflection of the ignorance (medical profession and non-medical observers) regarding MS. The tendency is to monitor the external. For now, I can walk and work…but my neuro told me he would have expected much more disability with the amount of lesions. So…we may “look” benign, but there’s always some MS action happening on the inside…plus, the emotional strain of anticipating future disability is definitely not benign. Sorry to whine…

  • Laura Kolaczkowski author
    6 years ago

    Whining is perfectly fine, but this doesn’t sound like a whine to me. You are just stating the facts – our looks can be deceiving.

  • penstsm
    6 years ago

    I was told at 29 (10 years after diagnosis) that my doctor thought I had benign ms. Here I am, 18 years later with two kids and am edss score of 7 and a diagnosis of spms. (Which I was given 10 years ago). I never envisioned being in a wheelchair when I got married and had kids. I wasn’t really prepared. I think you do a disservice to people to call it benign because it is MS…a totally unpredictable disease.

  • Laura Kolaczkowski author
    6 years ago

    Penstsm, Unfortunately, you are the perfect example of why instead of ‘benign’ MS being left to run its course, we need to push the medical experts to drop this label completely and treat as aggressively as possible. I am sorry your MS has progressed this way.

  • spuds
    6 years ago

    Benign? My insurance is in “treat the symptoms only” mode. While I wait for the new and different symptom to either dissipate or become my new normal.

  • Laura Kolaczkowski author
    6 years ago

    Spuds, are you diagnosed with RRMS or are they saying you have benign MS? It is crazy that insurance and not doctors make the decision on what is treated.

  • Jane
    6 years ago

    My neurologist told me one time there was such a thing as “benign” MS. Just because I was still able to walk and talk and was “stable”….I think he just threw it out there. I am still able to walk and talk….but, not as easily as there have been exacerbations since being told that. So….just take that label with a grain of the proverbial salt!

  • spuds
    6 years ago

    I feel for you Jane!
    I too am some what able to walk and talk-for now. But my insurance will only pay for treatment of individual symptoms

  • Laura Kolaczkowski author
    6 years ago

    Jane, you are a very good example of ‘benign’ being wrong – if you continue to get worse that word doesn’t fit. Thanks for stopping to share your thoughts. ~Laura

    PS – the researchers now tell us salt isn’t good for our MS so I guess we will have to find something else! 🙂

  • Joybo
    6 years ago

    I too have problems with “labels” be they medical or otherwise. But especially in MS it’s so “all over the place,” the use of some terminology on certain patients is truly misleading.
    I must say, I am unfamiliar with the word “malignant” when it comes to MS: I have never heard it described that way.
    I’ve been a patient for 30+ years and read lots of the literature, so I kind of wondered at that one.
    In terms of “benign”– mixed feelings there.
    I have RRMS and over many years that included intermittent blindness, paralysis, weakened to the point of being bed-ridden, etc., all of that went into “remisssion” (sorry) and I WAS able to live quite a normal life for about 20 years despite those episodes.
    Now more fully disabled by my “benign” MS, I have a new, poorer baseline that’s my new “norm” which I DON’T consider “benign.”
    But Neuro hasn’t told me it’s “progressive.” I must ask about this next week at routine visit.
    Meanwhile a good article with lots of good points.
    I think most important to remember is that words are JUST words. Yes they have impact. But if my “condition” stays the same as it is RIGHT NOW and doc says “Whoops! I meant to tell you you’ve got_______MS”, I would still be in the same condition, good or bad.

    I’ll stick by the “benign” label now that I’m old enough to have seen the comparison between the various types.
    You do make some excellent points. But just as I refuse to “label” myself in other ways (religion/ politicalparty), I’ll worry less about the vocabulary and more about how I feel and what we can do to treat and eliminate this THING, so that one day these labels will be UNNECESSARY!
    cheers!

  • Laura Kolaczkowski author
    6 years ago

    I didn’t know malignant as an MS term, either, until someone said their neurologist had used that to describe MS. I had to do some research on its use. Our insurance coverage gets caught up in the labels of our MS and use that to refuse treatment that might help. For example, RRMS is treated but once you get to SPMS, many insurers refuse to cover DMDs and will only pay for treatment of symptoms.Thanks for sharing – I love hearing from people who have lived with MS for decades – you have great experience we can all learn from. ~Laura

  • Sonya
    6 years ago

    Laura,
    Thanks for a wonderful article!
    When I lost eyesight in my right eye, 10 years ago, they diagnosed it as Optical Neuritis. They did testing of all sorts, but that was mainly to rule things out, not to make an exact diagnosis. The eyesight returned, & life went on. In 3 years, the same thing happened in my left eye, this time, with the assistance of another neurologist, the MS was diagnosed. I have been very fortunate thus far. I have the dreaded fatigue daily, summers here in the south, are almost unbearable, but I remain mobile, & able to care for myself, my husband, & my home. It may take me longer to get tasks done, but they eventually get done.
    I have other health issues, which cause pain & limited mobility, as far as walking as fast or as long as I would like, but I consider myself blessed.
    I do wonder, if I had been diagnosed earlier, would it have made a difference in the amount of ‘lesions’ found upon diagnosis, & did this indirectly or directly affect the other health issues?
    It should be up to the patient what treatment plan they choose to follow. What good does it do us to have these drugs available, if we are denied the opportunity to use them if we so choose?
    Alan Alda recently has been crusading for ‘straight talk’ from doctors; to put aside the “jargon”, & talk to people in a language they understand. I whole heartedly agree!! Maybe someone needs to “revamp” the terminology we use , especially in the MS community. These terms to someone newly diagnosed can be very confusing, & somewhat frightening, as if the the term MS isn’t frightening enough.
    Thanks again for your article.
    Sincerely,
    Sonya

  • Laura Kolaczkowski author
    6 years ago

    I love Alan Alda’s ideas about medicine – we have to develop a vocabulary that means the same to all of us (patients and doctors). Too many newly diagnosed people hear these words and it scares the #$&$ out of them. Thanks for reading and commenting. best, Laura

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