With multiple sclerosis, hindsight is accurate — and often unkind
A diagnosis of multiple sclerosis wasn't exactly surprising for this columnist
“Being diagnosed later in life is like watching a TV show with a huge plot twist revealed at the end of the season and then rewatching it with this new knowledge, picking up on all the foreshadowing and getting upset that you didn’t see all of it before.” — A popular quote from social media
Hindsight can be harsh in its blunt honesty. Perhaps it’s because, as the expression indicates, hindsight is 20/20. I’m not sure about it being perfect, though. Sometimes my hindsight tends to exaggerate the negative, like a voice in my head saying, “See, I told you so. It was so obvious.”
What I am sure of is that if hindsight were a person, it wouldn’t be who I’d want to gently break bad news to me.
I began having noticeable symptoms of multiple sclerosis (MS) at least five years before my official diagnosis in 2014. Obviously, I only recognize them as MS symptoms now, but even then I knew they were serious. I just chose to ignore them for as long as possible because I didn’t want to know what was wrong. I wasn’t misdiagnosed. I wasn’t diagnosed at all because I didn’t want to be. I didn’t want to be inconvenienced by bad news.
Consistent inconsistency
According to another popular quote, “Snow and adolescence are the only problems that disappear if you ignore them long enough.” I knew that my problems weren’t going to disappear. I think I just hoped they wouldn’t get worse and I could deal with them later, when it was convenient. Unfortunately, multiple sclerosis can’t be prevented, cured, or even suppressed by ignoring it.
I often describe MS as being “consistently inconsistent.” I adopted the phrase because I learned another redundancy during my medical training: “normally abnormal.” During one of my first visits with a neurologist following my diagnosis, he noted that I wasn’t surprised by my abnormal Babinski reflex and wanted to know how long I’d had it. I told him that my wife and I first noticed it almost six years earlier, but I had ignored it because nothing else seemed wrong. I even said that it appeared to be one of those “normally abnormal” things, like a slow resting heart rate in an athletic person. He wasn’t impressed by my logic or familiarity with the phrase. He told me that a positive Babinski sign was never normal and that I should have known that.
The problem was that I did know that and would have sent anyone else to a doctor if I had noticed it on a physical exam. So why did I ignore the sign in my own self? Was I arrogant enough to think I wasn’t “anyone else” or was I afraid of getting an answer I didn’t want to deal with?
I still occasionally comfort myself with the rationale that even if I had been diagnosed earlier, it wouldn’t have made a difference anyway. Of course, I don’t know that, and I don’t like to consider the fact that it might have made a difference. It’s not very good logic, nor is it comforting.
I thought ignorance was supposed to be bliss.
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
Carolyn Meehan
Similar here. Had MS ‘hug’ as a child. Didn’t say a thing, figuring my mom wouldn’t believe me. Then later going to UNM health insurance was cheap and not much was covered. Later working with good insurance had an MRI and better health insurance it was diagnosed as likely MS. Worked uten years after, until I could qualify for early medical retirement. Retired, low income, but I couldn’t have gone much longer working full time. After retiring and finally able to get enough sleep, my MS symptoms eased some.
Still it’s a really cruddy way to be forced to retire early, low income and all.
Benjamin Hofmeister
Thanks for the comment Carolyn! I like being retired but I agree with you. I didn't like being forced and this is not how I wanted it to happen.
Ben
Kim Ahmed
Absolutely! Thinking back, thought I was just a klutzy kid, falling down a lot, now realizing must’ve had it for a good part of my life, simmering on the back burner. Not that anyone here in the Midwest in the 1960’s would’ve known what to do about it.
Benjamin Hofmeister
Hi Kim! I fell down the steps at my wedding reception in 2009....well, that's a bit dramatic. I sat down hard on the 2nd step and slid the rest of the way on my backside. Regardless, I just assumed I was clumsy. Ah hindsight!!
Ra
Got dx´d in 2010 and had Babinski sign. If you are having a shoulda, woulda, coulda kind of day maybe this will help: I got put on Copaxone and it did nothing other than give me huge itchy welts and 2x the can´t breathe reaction. Then on to Fingolimod which also didn´t help. Finally started Ocrevus in 2017 which helped immensely. So, though you were late to the DMT party, I hope you have gotten efficacious Rx since joining. If you want to hit it hard and go for remyelination, consider a clinical trial sooner than later as a lot of them have a cut off of age 55.
Benjamin Hofmeister
Hi Ra! Like you, I started with Copaxone, then was put on Aubagio when the diagnosis was changed to ppms (maybe slow long term disability while we waited for Ocrevus). The Aubagio seriously raised my liver enzymes so I stopped taking anything until Ocrevus was approved in 2017. I'll have my 13th infusion next month.
I keep an eye on clinical trials, but with an EDSS of 7.5, I'm not eligible for any so far.
Frances Young
When are they going to start researching stem cell therapy in the US using cord blood? Easily available and not requiring chemo therapy first? It is being used in some foreign countries and seeing some positive results. But there is no big money for drug companies !! There are so many conditions that stem cells could help, why does it have to be so hard in the US?
Benjamin Hofmeister
Hi Frances. I don’t have an answer to any of those questions, unless you count, "I don't know", as an answer. I have cord blood and tissue banked just in case though. I figure it's a worthwhile investment even if it never helps me.
Yvonne Ashman
I was aware of 'changes' many years before my diagnosis in 2012...but I suffered a major motorcycle accident in 1991 and supposed that all the vague but challenging symptoms I was having were just a legacy of the significant injuries and brain damage incurred after that event. Other health challenges from childhood also clouded my belief that there was something more significant going on. Unfortunately, I did not receive decent healthcare from any of the doctors I was seeing over the years who chalked my concerns up to being a 'malingerer' and lazy despite debilitating and inexplicable exhaustion, malaise, vision problems, hospitalisation, etc. And, I believed them and became profoundly medico adverse. It took the loss of vision in my left eye to finally receive the detailed and thorough investigation I needed to finally receive the diagnosis of MS.
Benjamin Hofmeister
Thanks Yvonne! I also had old injuries (that I was also trying to ignore) to blame my symptoms on. I fortunately had good healthcare providers who listened, but I was the weak link in the chain because I kept trying to talk myself out of it. I sometimes think that's why the diagnosis "hit" me so hard later. I had to swallow both the diagnosis and my own foolishness.
Anna
Benjamin, thank you for your column. I have recently "discovered" this website. I live in Poland (central Europe), currently waiting for my spinal tap results but so far it looks it is primary progressive MS, especially that my brother and uncle had it. I am pretty depressed at the moment especially that the doctor said that if the diagnosis was confirmed, I would not qualify for Ocrevus or any other treatment apart from symptomatic treatment, such as pain (which I unfortunately feel), antidepressants, physical therapy, etc. For the past 4 years all my symptoms were treated as caused by emotions, depression as my emotional "construction" has always been weak. I think that what I need know is some tips as to how to carry on? How to motivate oneself to get out of bed in the morning? I suppose each of us has to find the answer on our own. Benjamin, please continue your writing, as there are not that many people with primary progressive MS, and it definitely helps others like me, for example:)
Benjamin Hofmeister
Thank you for reading Anna! I will definitely continue writing because it helps me too. I feel like I'm getting to tell all my worries to a room full of people who understand.
Susan R
I managed to get my diagnosis at 65, obviously missing a few signs along the way. I ignored a positive Lhermitte's sign for decades, thinking I was just " special". There was that electrical shock down my leg and a odd dizzy feeling when I would look up suddenly. I thought it was probably MS, but managed to have at least 65 good years. Now I am 72 and realize that old age is not a good time for serious health complications.
Benjamin Hofmeister
Thanks for reading Susan! I forgot about Lhermitte's sign. I remember having it, knowing it was a sign of a neurological problem, but still blowing it off with the excuse that I'd hit my head too many times.