Is multiple sclerosis everywhere, or am I just more aware of it now?
Since my diagnosis in 2014, I seem to see it in nearly everything I do
I encountered multiple sclerosis (MS) for the first time in a Valdosta High School math class. Before my geometry teacher was diagnosed, I had never known anyone with the disease and, in all likelihood, was completely ignorant about it.
I would hear the name again about 10 years later during a neurology lecture where I was training to be an Army Special Forces medic. But even then, much like when I was a brooding teenager, I simply filed the information away. If it ever came up, I’d be able to say I’d heard the name and knew of someone with it, but that was about it.
If MS was mentioned between then and my own diagnosis in 2014, I wasn’t aware of it. But it has my full attention now, and I seem to see it in nearly everything I do. That’s not a bad thing if you need material for a weekly column about multiple sclerosis, but it can be a bit frustrating if you’d rather not have it intrude on every part of your life.
I’m not suggesting that I think I should try to forget I have MS, just that I wish I wasn’t constantly reminded of it.
Everywhere or just more aware of it?
There’s a name for the notion that something you recently learned seems suddenly to appear everywhere. It’s called the frequency illusion, or the Baader-Meinhof phenomenon, and is a kind of confirmation bias. If you’ve ever encountered a new word while reading and then began seeing it everywhere, you’ve experienced this. There’s nothing magical or mysterious at work here. It’s really just a matter of becoming more aware of something even if you don’t consciously realize it.
I am very aware of my multiple sclerosis, and not just because of its symptoms and the loss of functioning it’s caused. I feel like I can’t open a magazine, browse a website, or watch something on TV without seeing something about my disease. It even seems to crop up in real-life interactions.
“Hey, Ben, I saw something on TV the other day that made me think of you.”
“Wow. Really? Was it about the Green Berets? Or rugged outdoor types?”
“No, it was a commercial for a new multiple sclerosis medication.”
It’s a little touching in a way that someone else experiences frequency illusion on my behalf. I feel like they have to care about me in order to be more aware, and I appreciate it. Still, I have to grit my teeth a little.
Maybe being more aware isn’t a terrible thing. I’m supposed to be my own best advocate, and as such, it behooves me to know as much as I can about multiple sclerosis. I should be tuned in to every mention of research, the development of new medications, and every word of wisdom and support from my peers.
I don’t like MS, but I like me. While it can be irritating, maybe being MS-aware is just practicing good self-care.
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.
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Comments
Dennis Dubber
You have to pay attention t ooo news about MS so that when a cure comes out you don’t miss it.
Benjamin Hofmeister
That's the truth Dennis! Definitely part of being a good advocate for yourself.
Kim A.
Thanks for explaining that! Kinda like when I had a Mercury then I saw them everywhere on the street.
Benjamin Hofmeister
Thanks Kim! I should have used that as an example. The exact thing happened to me and my wife when looking for our last family car.
Anna
Ben, thank you for your column, I check every week if you have written something new. I am newly diagnosed with primary progressive MS (I am 45), but living with it much longer, just not being aware of having it. I have calculated the years since your diagnosis (9 years?) and I just wonder how quickly it will progress in my case. I am still able to walk and work, may I know what your condition was like 9 years ago, at the time of your diagnosis? If of course, I am not being too inquisitive;)
The Cranky One
Unfortunately, Anna, there is no answer to your question about how quickly your MS will progress - the crystal ball on MS is permanently clouded over and unplugged. The only predictable thing about MS is that it is totally unpredictable, and to try and gauge how your MS will go based on someone else's experience is a classic "how long is a piece of string" question. Some people can have MS (both the RR and PP flavours) for many years and experience very little deterioration or disability, while other people's experience can be the opposite. The only possible indicator for you might be that if it's thought that you had MS for quite some years prior to being diagnosed, then the trajectory for you may remain pretty slow.
Whatever your future does hold, the best you can do for yourself is to not get caught up in any of the "miracle cure/diet" garbage that proliferates on the internet - getting caught up in those traps can lead to having a false sense of "control" over your MS - it can be a pathway to unhealthy obsessive behaviours and real mental health problems. Live a lifestyle which is healthy according to solid scientific evidence but don't be obsessive about it, and do make the most of every day. A diagnosis of MS can make people evaluate what is important in their lives and rearrange some of their priorities e.g. less work, more life. Try not to live your life on a "I'll do it when I feel better" basis as that may mean you never get round to doing "stuff" - I think Ben has written about this theme before.
And to give you some context - I'm also PPMS, appear to have had it for at least 8 or more years before being diagnosed at around 55yo - and that was 10 years ago. Around 7 years ago my MS was very negatively affected by another very rare and nearly fatal health problem which arose, but I'm still sort of mobile - albeit with a walker. However, while I no longer work, I still live fairly independently on my own with a bit of support that help with domestic mundanities.
Benjamin Hofmeister
Spot on as usual!
Anna
Thank you guys for answering my inquiry, I was just curious as the only indication as to how it may progress is my 4 years older brother who requires a cane now and my uncle who died a few years ago. I have never expected I would have it too, just seemed improbable that so many cases of MS would appear in one family, and all of us - primary progressive though with different symptoms. I just hope I am the last one with it. I haven't been offered any treatment by my doctor. She says I am not eligible for ocrelizumab, as it looks like I am past "the active inflammatory phase" of the disease (no new or enhancing lesions) and I am more in a neurodegenerative phase, so ocrelizumab wouldn't be effective in such a situation. At least this is how I understood it. I get only medication to treat my various symptoms that often go with MS. I am trying to stay positive but it is sometimes hard. I will try to remember not to live my life on a "I'll do it when I feel better" basis as that may mean I never get round to doing "stuff";) Once again a big thank you for replying to my post:)
Benjamin Hofmeister
Thank you so much for reading it Anna! Even if no one ever responded, writing a column and sharing my thoughts is therapy for me. Knowing people read and are helped is wonderful beyond description.
I'll answer your question, but understand that even though we both have a diagnosis of PPMS, our progression, symptoms, level of disability, and timeline will be different.
I can't tell you how your MS will go....no one can. The first person I met with PPMS had had it for nearly 20 years and walked with a cane. I thought that mine would go just like his and was very discouraged when it didn't.
When I was diagnosed in 2014, I had a limp. By the time I retired from the Army in 2017, I used a cane but could still run a few steps. By 2020, i couldn't walk anymore and my hands and arms have continued to worsen since then.
My doctor calls my case unusually aggressive and rapidly progressive. Do not compare yourself to me. Especially with the advances in treatments, it is very unlikely your journey will be similar.
I can't tell you what to expect, but I wish you the best.
Ben
Tom A
How are you, Ben?- In the 1960's and forward, Jerry Lewis (famous comedian) made the medical term muscular dystrophy (MD) a household word with his yearly Labor Bay televised "telethons" to raise money, which he did quite well. So when MS came along for me and my extended family, an education blitz was immediately needed to distinguish between MS and MD. Jerry Lewis did a great job illustrating the devastating and helpless nature of MD, so the stereotypes were already in place and it was difficult at the time for some to begin with an open mind about MS because MD immediately came to mind, with imagery of the helpless kids. Same problem with some employers at the time, they thought you would end up helpless and retarded in a wheel chair.
Benjamin Hofmeister
Always good to hear from you Tom! Reminds me of hearing someone in another room looking for me while I was still in the Army. "The medic that was in the targeting cell yesterday. You know, the guy with the cane and the limp. He's got scoliosis or something.".
I guess it rhymed with multiple sclerosis and was a little more familiar.
Jae
I do wonder if people just lived with the symptoms and went undiagnosed in decades before but now that it's so much easier to test for it, we now have more confirmations.
Benjamin Hofmeister
I think that's exactly what happened Jae. When I feel bombarded by MS drug commercials etc, I can't help but wonder if someone was diagnosed early because their doctor saw the same commercials and considered MS as a cause of their symptoms.