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A patient sits on top of a pile of books while three different doctors are pointing and trying to explain something.

A Need for Better Educational Practices When Diagnosing MS

We’ve all seen it. Someone who is newly diagnosed with multiple sclerosis (MS) wondering why, months after starting a disease-modifying therapy (DMT) for MS, they are still experiencing symptoms. Or maybe someone who has had MS for a while and just started a new, possibly more aggressive DMT is frustrated that it’s not doing anything for their older symptoms that have been sticking around. Maybe you know the answer, or perhaps you’re not entirely sure. Either way, the fact that people are asking these questions speaks to a pretty significant problem in the world of MS, if you ask me – poor educational practices for newly diagnosed patients.

Are doctors taking the time to educate patients?

In my own experience, and from the countless diagnosis stories I’ve heard over the years from others living with MS, many doctors/neurologists don’t, for one reason or another, take much time to educate their patients about the disease they were just diagnosed with. It often seems to go a bit like this: after someone starts experiencing their first major bout of symptoms, they see their doctor who suspects “MS” and orders a bunch of tests.

An overwhelming amount of scary information

Since their doctor didn’t really explain what MS is too deeply, they go home and ask Dr. Google about it. Naturally, this brings up an overwhelming amount of scary information that, considering the stress of the situation, is just too much to try to take in. A couple of weeks later, the test results are in, and when they see their doctor, he/she tells them that they have MS. Their doctor tells them that MS is not fatal but is chronic, so they will have to choose a medication to start taking, based on a few booklets for 2 or 3 DMTs.

I only had 3 treatment options

When this happened to me, I was given 3 options. Granted, there were not as many DMTs in 2010 as there are now, but in hindsight, there were obviously a lot more than 3 out there. But what did I know? I was still trying to get a basic understanding of what MS even was! The 3 booklets I was sent home with were full of complicated medical information, and at the time, it all felt well-beyond my comprehension. So, rather than choosing a DMT based on what I thought would “work” better, I made my decision based on the needle sizes of my options because, at the time, I wasn’t a huge fan of injections.

A huge, hopeless maze

This common story highlights the issue I brought up at the beginning of this post. Newly diagnosed patients don’t always receive a lot of education about MS and the available treatments. Expecting people to be able to learn how to manage MS on their own effectively would be like sending someone into a huge maze and expecting them to be able to find their way out without the help of a decent map.

I didn’t fully understand the point of a DMT

I assume the majority of people living with MS would say that the point of a DMT is to reduce the number of relapses an MS patient will have in a year. While I knew this when I was looking over those 3 booklets my neurologist sent me home with, I would say that I didn’t actually understand what that meant, not really.

What does MS “remission” mean?

I think it’s important to remember that most people, at the moment that they receive their diagnosis, don’t have much (if any) medical knowledge, let alone a detailed understanding of the nature of MS. For example, I heard relapsing-remitting multiple sclerosis (RRMS) and assumed that this meant that any time I was experiencing a symptom, I was “relapsing” and that “remission” meant I had “gotten over” a relapse and was symptom-free. Therefore, a DMT was supposed to completely clear up my symptoms so that I could enjoy a long and symptom-free remission between my limited relapses.

I thought my DMT wasn’t working

That would be nice, wouldn’t it? But RRMS doesn’t exactly work like that – but again, what did I know? I was 20 years old. All I really knew was that I wanted to get back to hanging out with my friends. Months after I was diagnosed, I still had a few symptoms sticking around, so I concluded that my DMT wasn’t working.

The reality was devastating

It took me a while to figure out that “relapsing-remitting” didn’t exactly mean what I thought it did, and it took me a little longer to learn how this disease actually works (at least how we currently understand it to) as well as what the role of a DMT actually was. I feel like the moment I came to this realization was just as devastating to me as the moment I found out that I had MS. All my expectations regarding this disease and how it would affect my life were not based on reality. I thought I knew how the maze I had been dropped into worked, but in actuality? The map I was following throughout the beginning of my “travels” was all wrong.

Watching an explanation from Dr. Aaron Boster

I think there are a lot of important things about MS that someone who is newly diagnosed should know. But, what’s probably the most important is what the point of a DMT is. I recently watched a video by Dr. Aaron Boster (who I definitely suggest you look up on YouTube for his many amazing videos about understanding MS), and he did what I would consider the best job of simplifying what the goal of a DMT is.

Understanding DMTs through a birth control example

Basically, he compared DMTs for MS to birth control. He explained that you don’t take birth control to get rid of the kids you already have, you take it to prevent having any more. When talking about DMTs, you don’t take a DMT to get rid of symptoms you already have, you take it to prevent new symptoms from appearing. Obviously, I’m paraphrasing, but it’s so true, and had I heard that when I was first dropped into the maze that is life with MS, I probably would have taken a much different path and experienced much less disappointment due to my unrealistic expectations.

Do doctors need better resources?

I understand that doctors have a lot of patients and not a whole lot of time to spend with each of them, but I’m not sure if that’s a very good excuse for someone not receiving a basic understanding of their disease. However, I’m definitely not saying that it should fall solely on a doctor/neurologist to educate their patients on the inner workings of an autoimmune disease like MS. That would be unrealistic. But I still think that it’s a doctor’s job to ensure that their patients leave the exam room knowing what’s going on. Maybe it’s time for doctors to have a better collection of educational resources to give to their patients? Resources that will spend a lot more time explaining what MS is, how it works, and what can be expected of both the disease and the medications used to treat it.

Taking advantage of technology

I’m not talking about some little pamphlet from a pharmaceutical company; I’m talking about something that takes advantage of the technology of the 21st century. Something like… a simple card with a link on it to a series of educational videos about MS, because when someone has just been handed a life-long diagnosis, the last thing they probably want to do is sit down and read a book about it.

Videos might be easier for people to digest

The vast majority of people have access to the internet and a series of YouTube videos (for example) would be a lot easier for most people to digest and would also ensure that everyone newly diagnosed with MS had easy access to basic facts about the chronic illness that they are now living with. Basic facts that could greatly help develop people’s understanding of things like how MS works and what the role of a DMT is, which would go a long way in helping to manage expectations.

Did your receive a good explanation about MS?

So, what about you? Do you feel like you received a decent explanation of what MS is and how it’s treated when you were diagnosed, or did it feel rushed and lacking? Do you have any ideas on how professionals in the medical community could better address this problem? Share your thoughts below!

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

  • Hollithia1
    9 hours ago

    I was diagnosed in 2010. At that time it was suggested by my neurologist that I begin injecting Copaxone. I began the daily treatment and after a month or so noticed that I continued to experience symptoms. I contacted my doctor with questions about this but was never given an explanation. When my MRI results showed no change in lesions but my symptoms continued I became really confused. The actual reality of what an DMT can do was never explained to me. I think more information needs to be available to patients after diagnosis about what to expect.

  • Babs25
    5 days ago

    I was diagnosed in 2010.I didn’t receive an explanation about MS except that I had RRMS and SPMS. What did that mean? I would have liked to know what to expect with RRMS, what are relapses, what should I expect with and after a relapse. And what does SPMS mean? When should I expect this to happen and what will I experience? I agree a list of videos about MS and the different drugs is needed. I too had a pick of 3 drugs which were not explained to me. Being overwhelmed with the diagnosis of MS a person needs a little help from their doctor about MS

  • greatexp
    5 days ago

    As always, your post hits the nail on the head. Thank you for writing about this.
    When I was diagnosed with RRMS, the nurse practitioner was obviously very uncomfortable giving me the diagnosis, which my PCP had discovered. She stressed the fact the “people don’t die from MS,” but immediately said I should get my affairs in order.
    It was on record that I had been a nurse in the past, so perhaps there was an assumption that I knew all about it. (We had covered about one whole paragraph in nursing school about it, and that had been many years ago.) But I was simply told that I would be referred to a neurologist without any discussion of treating the current relapse which was having profound effects. I had a long wait to see the neurologist and was given no information to digest while I waited. The internet has an overwhelming amount of information, but also misinformation, but that was my only resource, and I had no guide.
    I no longer see that PCP, but wish that he and all other doctors could read what you’ve written and come up with a basic information packet with links to resources to give to patients.
    Is this something that you and folks here would be willing to put together? What a godsend that would be to the newly diagnosed!

  • rhogb
    5 days ago

    When I was diagnosed with MS , my neurologist said ” I think you have MS , one of the nurses will give you a book about it ” and walked out of the door.
    Now I had heard of MS but it is not every day that you are told you have something like this.
    I was left lying on the bed with all sorts of things going around my head , and was basicly left all day untill my wife came in that evening. I think that I was basicly in shock.
    Don’t get me wrong my neurologist was one of the best in the country (UK ) and is now a professor in a teaching hospital and also inventing some of the top notch new medications that you can now get .
    But he lacked the basic s of how to tell people that they have MS and what it entails.

  • Tazz
    6 days ago

    Back in 2013 when I was told I had MS I was given no info at all – I was also not given my diagnosis until nearly five months after an MRI which was so conclusive that no further tests were required (I’m now confirmed as PPMS so there were no relapses to give any clues as to what was wrong with me, and two different neuros had already said “It won’t be MS because it doesn’t fit the pattern”. On the day I was told I had MS my then neuro was running two hours late in the clinic that day and simply told me that he’d contact my GP to arrange a script for medication (which turned out to be Rebif – which didn’t agree with me at all).

    I ended up doing all of of my “learning” about MS as self-directed research online, and found so much stuff which can mislead/misinform people, especially in the “MS Diets” department. All I can say is it was a b… good thing my work involved extensive research skills as I was able to apply these to finding out about MS.

  • Tazz
    6 days ago

    There is an answer to some of these education problems – it is the free online MOOC put together by the Menzies Institute for Medical Research and the University of Tasmania. It runs for 6 weeks, and based on student feedback was in the top 100 MOOCs for 2019 (and was ranked No 1 by Class Central). Thousands of people all round the world have done the course, which is ideal for PwMS, their families, friends, and carers, as well as health professionals who just want to know more about MS. The next running of the course kicks off on 16th March 2020 and you can register now.
    https://ms.mooc.utas.edu.au/
    https://www.classcentral.com/report/best-free-online-courses-2019/?utm_source=cc_newsletter&utm_medium=email&utm_campaign=newsletter_february_2020
    (To the MS Net site administrators – please do not delete or block this comment before you check the links above – I am not one of those spammers posting garbage about herbal cures or other rubbish)

  • Tazz
    6 days ago

    Forgot to mention – I’ve done the course, as have quite a few people I know, and it is brilliant – extremely well put together using sound adult learning principles and methods – a mix of videos, quizzes, transcripts, animations, and interviews with real PwMS and expert clinicians (and my neuro is one of them).

  • potter
    6 days ago

    I just got a small pamphlet on Copaxone when I was diagnosed. My neuro told me to do some research on the internet. The first thing I did was find out what DMT my insurance would cover. Rebif was new on the market and it was covered. I switch to Tecfidera when it became available. I was given very little info on MS, I do remember being told that I would be in a wheel chair in 10 years. I am starting on my 13th year and still walking! I learned that I had to be informed and insistent on how I should be treated. My neuro told me once that I asked him the hardest questions and how he was impressed how well informed I was. Potter

  • weezy
    6 days ago

    Matt, I was diagnosed 16 yrs ago and received very limited information but was strongly advised to start a medication right away. I was also told that I would probably need a wheelchair by the time I was 55, I am now 61 and have been using a cane for about 6 yrs. I have learned most of what I know from experience and relapses. I feel very fortunate/blessed. I was also told that MS was not terminal.

  • JimmyMac
    6 days ago

    General practice doctors know little of MS or that’s what I’m sticking to after a general practice doctor diagnosed me with a brain tumor, without an MRI, scaring the white off me. So when my first neuro said it looked like I had MS, I was excited. I really don’t remember what she said after she told me MS was not terminal but the lack of guidance I got before selecting my first DMD was incredible. I now know that the first DMD is only a SWAG (Scientific Wild As3 Guess) but it would have helped if a doctor had told me that. I wouldn’t have sued. In fact, I would have hugged her because my life span was in best termed in years not hours.

  • LadyJAD
    6 days ago

    My first euro was friendly with my family(operated on Dad and my brother) and w/o ANY tests told my mother and I that I was a 33 yr old hysterical young women going thru a terrible divorce and IMAGINING my frozen bladder and bowels and crazy-bone tingling in my legs. MY mom God rest er soul told him in No Uncertain terms she expected him to sckd. me for tests staring that afternoon. my dad (OBGYN) arranged my room etc and I had a cat scan mylo etc. 5 days later 2 mir’s Brain and full spine 1987. The neuri=o then went on Vacation w/o reading results when he did he was so embarrassed he told my Dad the results not me.Second neuro explained things and third was an absolute gem.

  • CindyLou
    6 days ago

    You made many good comments regarding the MS diagnosis. My story was a bit different. I had always worked in the medical field in some capacity and always felt I knew it all. I don’t. Anyway, I was at work when things got weird I definitely was having a major brain fog. I was sure it was a stroke. I immediately saw my doctor who said , no it was my hormones and stress (back then doctors always said that). However, when I saw him a week later, I was dragging one leg and also slurring, so he sent me to a neurologist. I was getting closer to a diagnosis, but this doctor said I actually had Myasthenia Gravis (MG). I didn’t agree, and I knew enough to do some homework and figured out it was MS, but it took me 4 years and a new doctor to get an agreement on that dx. I did indeed have MS more notably, it was SPMS! Since he knew I had some medical knowledge he didn’t explain anything. He assumed and I didn’t ask.
    I didn’t really know what to ask. So I had more homework. He said I’d probably had it for 20-30 years by this time, so no DMT was going to do much good. Update: Again a new doctor who says no DMT’S needed however we could try something if I wanted to. I am now 70 yrs old, my current dx is not SPMS, it’s MS. I wonder which? All that is done by the doctors is treat the spasms, pain and fatigue. I’ve learned all that I know about MS from my research, I am basically my own doctor. Problem is I’m not qualified. With 20/20 hindsight I figured I’ve dealt with MS since High School. I feel that I know more about MS than most of the doctors I’ve seen, doctors need the education before they can educate us, the patient. Finally I was dx’d with MS.
    There is already a lot of information out there. Always be sure to use a reliable source and get information that doesn’t scare or diagnosis you. Where there is an educated doctor, there is hope in getting the right understanding of your MS and All your options to treat your MS.
    We need to be educated and so does the doctor, together we work as a team. I received many different and incorrect diagnoses before someone got it right, but so much time passed that I missed my chance to slow down the disease. The jury is still out on MS and the elderly. Do we need a DMT at this point or not, let alone which one, and in my case it’s a question of SPMS or MS. if we even treat.
    I’m obviously not new to MS but after all these years it feels like it is, as I have no idea which treatment, if any, is needed, it’s still just like the beginning of this journey.
    May I suggest, learn all you can on your own, then you will know what you need to learn from your doctor. If you don’t know the subject, you can’t ask the questions. It’s an unending, on going, learning process and we need to keep learning in order to make good decisions. Good Luck and God Bless.

  • KForg
    6 days ago

    First neurologist said I had carpal tunnel. Second neurologist thought I already knew so she was referring to the active lesions like I already knew. When i stopped her, she said, “Oh, so how are you with shots or would you prefer a pill?” Everything I have learned has been on own. Diagnosed in 2016

  • SueK
    6 days ago

    When I was diagnosed 20 years ago, my husband and I set out to read up on MS and learn about what options were best. My doctor’s response to us was, “well if you are going to do your own research, what the he’ll do you need me for?!?” Coming from the Assistant head of the Neurology at Yale School of Medicine, this was unexpectedly unprofessional. To think he is teaching future generations of doctors, now that’s scary! We were not exactly a couple of uninformed fools turning to Web MD for our answers. My husband is a PhD level Medical Research Scientist. Needless to say, we found a different doctor immediately. Doctors these days are too rushed, overbooked, and specialists all too often are more interested in managing the disease rather than educating the patient. it would be helpful if there were counselors available to answer questions, explain the disease, and provide guidance. Most patients do not have the at home support that I am blessed to have.

  • StephanieCT
    6 days ago

    Thanks Matt! That is so true about finding educated doctors that will explain a new over whelming condition with out being rushed. I’ve had MS for 10 yrs now, and my younger sisters do too! Which is odd cause we all have a different parent. But my youngest sister newly diagnosed in Florida is going through the roller coaster ride of finding a good Dr to treat her MS. Dr Aaron Booster video’s are a Godsend!

  • MacBrian
    6 days ago

    After my diagnosis in 2010, I too was given three huge books — my assignment was to basically “pick your poison”. All three were injections, so I picked the one with the best propaganda. The real education didn’t come until I started attending the drug manufacturer’s continuing education dinners (which, alas, seem to have disappeared now). However, my doctor and neurologist were pretty thorough and explained that the DMT won’t make my MS any better — it’s goal is to keep my MS from getting worse. Double-edged sword when you consider the side-effects. I’ve been on the same DMT for 10 years and have had only one relapse, so I’m thinking it’s working pretty darned well. The side effects are familiar and easier to deal with now too.

  • elsanch54
    1 week ago

    Reading this article helped me understand what MS is. When I was diagnosed, I had no idea what MS was. After I read This article, it helped me understand MS better. No one in my family had MS, So how can I understand it? I was diagnosed with MS 5 years ago, and over that time, i never understand ms nor accepted it. How can I accept MS if I never really comprehended what it is. I never took my medication and didn’t understand how it was going to help me. However, thank you so much for this article!

  • Lisasnyc
    2 weeks ago

    Hi Matt, this is an excellent question.

    I have had the MonSter for 15 plus years, maybe more, if I look to earlier issues they now seem MS related. The good thing was that my first neurologist, now retired, was fantastic!!

    I went to him with optic neuritis after being referred by my ophthalmologist. He showed me the model of the brain, pointed out the optic nerve, and indicated that the optic nerve could have caught a cold and become inflamed. Additionally, he said , my white blood cells may be attacking the covering on my nerves because my body was mistaking that covering as a foreign object. He immediately told me about the DMT’s, suggested a course of SoluMedrol, to help clear my eyesight, while suggesting a spinal tap. He went on to explain what the spinal tap is looking for. And that if it comes back negative you may still have MS and need further tests but, if it comes back positive you definitely have MS.

    He was my doctor for my first 10years with this disease. He changed my DMT after I developed lesions on my C-Spine. He retired shortly after. I asked for copies of my records to give to my new neuro. He made sure to give an extra copy for my personal records. The neuro I have now is just as good. I have been very lucky. I have heard horror stories about people trying to find good care and get a definitive diagnosis. Try to find a neuro who will give you both his expertise and his time!! Good luck, Lisa

  • ColleenNyc
    2 weeks ago

    Hi Lisa,
    Glad to hear you’ve had good experiences with doctors. I was diagnosed three years ago and have had a hard time finding care I’m happy with. Would love your recommendations if you’re still in nyc! -Colleen

  • Lisasnyc
    2 weeks ago

    Colleen sorry to hear you have not had good luck.Unfortunately, I am no longer in NYC, but the Mid-Atlantic. Can anyone reach out to Colleen with any recommendations?? Lisa

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