With multiple sclerosis, don’t worry about asking stupid questions
No matter how much I learn, I have more queries for doctors and patients
I ask a lot of questions. I have to, because I’ve come to realize that I don’t actually know that much. Asking questions (even to myself) is the only solution. Oddly enough, though, learning new things doesn’t completely scratch my itch, as the answers just keep showing me how much I don’t know.
My cup doesn’t run over with knowledge; it just seems to get less full the more I try to add to it.
This truth seems to apply to everything, but especially so for multiple sclerosis (MS). I’d like to think I know more than I did before my diagnosis, but I still feel like I hardly know anything at all. Over the years since then, I’ve read everything I could get my hands on, followed clinical trials, and bombarded my neurologists and others with MS with questions — lots of questions. I just hope there weren’t too many stupid questions.
This is the part of the movie when the record scratches, the scene freezes, and a voice-over says something like, “But there is no such thing as a stupid question!”
The way I learn
If you’ve worked in retail, waited tables, or been quizzed by a stranger about your MS, you might take exception to that idea. Per this article from The Current, there are such things as stupid questions. But it’s not the question that’s dumb; instead, it’s the setting of the question that makes the difference. Feel free to comment with examples of questions that make good sense when asked by your neurologist, but wouldn’t if asked by the cashier at your grocery store.
While I can’t guarantee that I’ve never asked a stupid question in my lifetime, I can honestly say that I’ve never asked one about my MS. No questions are taboo when you have this disease and want to know more about it. That should be understood, no matter where you are in your medical journey.
When I was diagnosed, I had many questions and little reservation about voicing them. I asked the people I felt were best able to provide the answers — other people with multiple sclerosis. At the time, I was quietly informed that we don’t talk about unpleasant things (best not to think about those), and I should ask my doctor. I did, but I also found other people who did welcome my questions.
I still don’t feel I know much about MS, but I’m learning by asking — even if that brings up more questions. I don’t like my disease, but it has my interest and, all too often, my undivided attention. I think I’ll continue to ask every question I want, no matter how they sound. I’ll also reciprocate by answering what I can, or giving my opinion when asked for it.
Unless you know everything about multiple sclerosis already, I think it behooves you to learn all you can. If you need motivation to get started on your queries, today is National Ask a Stupid Question Day. (No, I didn’t make that up.) On this day, you have the perfect excuse to start asking the questions that you’ve been too embarrassed to bring up before. Go ahead. You’ll be glad you did.
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
Trish Nafotz
The symptoms/issues/problems that restrict us are the embarrassing ones that I don't even mention to my neurologist unless he happens to ask. Not because it's a stupid question, but because we were taught that it's not nice to talk about 'those things'.
Benjamin Hofmeister
Very true Trish! Not wanting to seem rude or talk about not so nice things is akin to not wanting to appear unintelligent, but if we can't ask those things to those in our community, everyone gets cheated.
Really good comment!
Ben
matthias mcclung
I WAS DIAGNOSED With ms in 2021 and ther times when i am so down what do i have to look forward too?
Claudia C
Matthias, you don't die from MS, you live with it. The early years were anxiety ridden for me. Get yourself on the most effective drug you can, change your diet to the most healthy you can, get the most exercise you can and surround yourself with the most supportive people you can. Find out if seritonin re-uptake inhibitors might help with mood changes. Know that every one of us have been in your spot and that you aren't alone.
Benjamin Hofmeister
Thank you Claudia!
Benjamin Hofmeister
Hi Matthias and sorry to hear about your diagnosis at the same time. Claudia nailed it! If I could add anything, it would be to find the right neurologist for you. That doesn’t mean you're always going to like what they say. I was very fortunate that my diagnosing neurologist referred me to an MS specialist. It's not that you should trust a neurologists, it's that you should find a neurologist that you are confident and comfortable trusting.
If I can reinforce anything Claudia said, it would be about finding the right support for you. I just can't emphasize enough how important mine is to me.
What to look forward to? Nobody knows. Everyone's path is unique. I wish someone had told me that at the beginning. I might not have wasted time comparing myself to others and thinking what am I doing wrong?
Ben
Lesley R Kolber
WITH THE RIGHT MEDICINE MEDICINE FOR YOU AND TRYING TO KEEP AS ACTIVE AS POSSIBLE THE FUTURE CAN BE GOOD EVEN GREAT. A WOMAN WHO HAD MS HAD JUST BEEN EXERCISING IN A GYM. SHE TOLD ME TO KEEP MOVING., AND BUILD UP SLOWLY SO YOU DON'T GET TOO TIRED OR DISCOURAGED. I HAD 3 CHILDREN TO RAISE AND I TOOK THOSE WORDS TO HEART, I WORKED AS AN ICU NURSE FOR 30+ YEARS & I HAVE CONTINUED ON MEDICINE FOR ALMOST 30 YEARS. YOU CAN HAVE A LIFE !!!!!!!
Ginny
A two-part question: Does not having been breast-fed (no colostrum), lead to a faulty immune system that can't cope with Epstein Barre Virus? Why are our immune systems acting hay-wire with EBV while loads of people get on just fine after being infected with EBV (no MS)?
P.S. I did mention to my neurologist that , for interest, my GP tested me for EBV, since I have MS....and yes, it was positive. She replied , in a condescending tone "Everyone has been exposed to EBV!"
And that was that...no further discussion regarding the EBV connection to MS
Benjamin Hofmeister
Hi Ginny! The best I can do is give my very non-professional opinion. I was breast fed and still got EBV, albeit a case that didn't require even a doctor visit. I actually didn't even know for sure until I had my titers checked 30 years later.
I have pretty aggressive PPMS, I only retired from the Army 6 years ago and could still run a little then. Now I'm down to needing help with most activities of daily living. I think (and an MS specialist convinced me of and shares this view) that EBV may have been "A" trigger, but probably wasn't "The" trigger for me (and I can't overemphasize the "for me" part). I've strained my immune system in every way possible and I don’t know which trigger might have pushed it over the edge.
https://multiplesclerosisnewstoday.com/columns/2023/03/30/fruitless-search-cause-my-ms-i-became-detective-my-past/
Was EBV your triggering event? Very possible, but again, just the opinion of a professional.... MS patient who probably reads too much.
Ben
Ginny
Thanks, Ben, for your info....interesting. Yes, lots of reasons for an immune system that acts hay-wire. I also read that having a ceasarean birth can contribute to a poor immune system...not being coated with the immune-boosting fluid from our Mother. I was born the old-fashioned way, being of a certain vintage, so that wasn't a factor. I don't remember actually getting sick with EBV , but similarly, I was probably pushing myself over the edge when I did get MS. A perfect storm, perhaps!
Benjamin Hofmeister
Perfect storm? I wish we weren't so perfect lol.
Anna
That's true, Ben, the problem often is, however, when doctors don't want or do not have time to answer your questions. I've had such a situation recently when my doctor told me that she didn't have time for me. I suppose that might be due to my primary progressive diagnosis and no treatment available for me, but I felt rejected and hurt. Today a thought came to my mind that what is most important in this illness is the fact that you do not reject yourself.
Benjamin Hofmeister
Thanks for the comment Anna and sorry you're having to face this disease without the support you need.
Not rejecting myself was often harder than not being rejected by others. I think we can hold ourselves to impossible standards and be our own worst judges when we don't meet them.