Myths and Misconceptions about MS

Myths and Misconceptions about MS

There are many misconceptions about MS out there – you’ve likely heard many of them yourself. What are your most frustrating “MS Myths”?

MS myths and misconceptions

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  • PetieJ
    1 year ago

    How bizarre! I’ve read all the comments-finally noticing the dates they were written-and was struck by the comment from Marti whose neuro announced that MS “burns itself out”. My sister, two years older, diagnosed exactly a year before I was, told me that her doctor had told her that very thing a year or so ago. In your mid 60’s is when this happens btw.
    I recently changed neuros this past spring and asked him this very question. He kind of grinned and said Weellll, it’s kind of a theory that’s being tossed around. But we don’t really know.
    Well then, keep it to yourselves, docs, til you have the facts.
    I was diagnosed in 1991 and in May had the first MRI that included my cervical and thoracic spine!!! Never had anyone looked beyond my brain! So, I discovered I had cervical lesions and stenosis in my neck, so I have (another) fusion to look forward to!
    That’s just Nuts! Just like the doctor who said to DarlaKaye that she couldn’t have MS bcuz she hadn’t had a major vision event!!
    It’s scary having a doctor you Know just isn’t on the same page or know what book to even look for! My former neuro retired after I saw her twice and was replaced by a sleep specialist. The only thing he ever did was try to get me to try other drugs.
    I was at a Kidney Association Walk last fall and my friend, who was in charge of it all, works for a group of specialists. She asked every doctor in that office if they had MS who would they go see. And one of them at the walk was telling me that if you don’t like your doctor, don’t feel like you can talk to him/her, just don’t feel comfortable, you need a new doctor!! So I checked out the website for this other neuro practice, read the bios, all the docs had a personal statement, they’re specialties were spelled out, and I made my choice; the guy they All mentioned. But I did figure out some time ago that if you’re told you need to see someone for such&such, put it back on them and make it personal. Who would You see? Who would you send your wife to? I’ve found it makes a difference.

  • jennyb
    2 years ago

    I finally got over the guilt of “if I would only try harder” An MS diagnosis made that easier for me. Off subject, I know.

  • Lori
    2 years ago

    I’m calling BS on the “Children of parents with MS have a “”slightly”” higher risk” for developing MS. Research has shown that “primary” family members of a person with MS have a 40% higher than normal incidence of also having MS!!!

    BOTH of my daughters have MS – so please take this misleading statement off your slideshow and put on the REAL picture!

  • Lori
    2 years ago

    I can’t find the source of that percentage number (thanks brain fog!) but I do know that I read it and it was a new study from a credible source (like NIH or something). Sorry if I seemed cranky earlier…it just upset me that several sources show the increased prevalence of MS in primary family members and it just irked me to see you say something that made it seem insignificant. I expect you to give the most up to date and accurate information for those seeking knowledge not minimize or trivialize the known risk factors.

  • Nancy W
    3 years ago

    I thought my family understood! We went out to dinner in a hot night. My brother and sisters wanted to walk for a few blocks. I said no, I will just go home. I wish people would accept no for an answer. They said they just want to include me. But it is more upsetting to me to have them all accommodate me then it is if I just go home and rest.

  • Lori
    2 years ago

    Hi Nancy – I know this is an old post from you – but I wanted to chime in…because you need to remember when things like this happen that it is THEIR problem – not yours. You can’t control how people react to you and your needs (and they ARE needs – the need to care for ourselves and be gentle with ourselves!) If you have explained things and they still don’t “get it” – then just write the reaction off and proceed with what you need to do for yourself without thinking about how ANYONE else feels about it. It’s hard – but this is a disease. You have as much right to say you are tired and don’t want to go for a walk in hot weather as a recovering chemo patient does! The only problem is that you probably “look so good” or “don’t look sick” like a cancer patient might. I have had 25 years of this disease and am in secondary progressive stage – so maybe my view is a little more selfish. Between age and a chronic disease- you might tend to be a little more “open” with your opinions and statements LOL! But I have no trouble now telling people that I have MS and I have trouble with “xxxxx” in their proposed plan – or that I will need “yyyyy” to fully participate in their plan (i.e. my powerchair or scooter and a large frozen drink! Sugar free slushies at Sonic work wonders! So do Wendy’s Frosties – but that’s a little calorie rich!). I think of it as educational opportunities.

    So-I may have rambled a little – but just remember that you come first here. It takes awhile to make that mental shift and not let other’s comments or attitudes affect you – but the sooner you can switch your brain to that “shut off” point – the better. 🙂

  • Mspbfh2
    3 years ago

    It pisses me off when “friends” post articles that diet will CURE MS. If that was true wouldn’t everyone be cured since managing a diet would be soooo much easier then the meds, PT, the fatigue…. The last was a Dr. (???) Wahls who was CURED by diet and was able leave her wheelchair behind and go bike riding. Maybe I was insulted without needing to be, but just got the feeling that she thought that IF I would just do the diet and accept religion then I would also be cured…

  • Wampo
    3 years ago

    So true

  • Erin Rush moderator
    3 years ago

    Hi Mspbfh2! I think it’s pretty normal to feel irritated by people posting “helpful” articles about the latest and greatest “cure-all”. You are definitely not the only one who feels that way! Thank you for commenting. Best, Erin, MultipleSclerosis.net Team Member.

  • Carolyn
    3 years ago

    Definite diagnosis in October 2000- I regularly go to the gym and “work out” although it is hardly a work out! But I get confronted with comments all of the time like “I hope you get better” (with the sad, trying to be empathetic look) or or if you work a little harder, you can [lift] more or [run smoother].” I want to just slap some people! Look, I am a regular gym goer because I am trying as hard as I know how to maintain the function in my ever-weakening legs. I have passed the relapsing-remitting portion of the disease and am on the steady decline of mobility and independence. Everyday is different-as far as ease of movement. Depending on factors such as too much heat, muscle fatigue, body is fighting off some sort of virus or even diet. I know I am slow, but why don’t you offer me an arm instead of race around me?!

  • Meagan Heidelberg moderator
    3 years ago

    Hi Carolyn,
    Thank you so much for commenting and being a part of our community. You sounds like you’re taking wonderful care of yourself even through the difficult times. I believe that many people are not educated enough on Multiple Sclerosis so sometimes they don’t really know what to say. Keep up the good work, and know we are here for you.
    Warmly,
    Meagan, MultipleSclerosis.net Team member

  • DarlaKaye
    3 years ago

    In 2005 the right half of my body (including half my tongue and face) lost about 10% feeling and started tingling. After an inconclusive MRI, I was sent to a neurologist who couldn’t find anything wrong with my MRI and told me I probably had a virus because he couldn’t think of anything in the brain that would cause exactly half your body to lose partial feeling. He also said that if I had MS, I would have had a major event in my past involving my vision – like going blind for 3 days or something like that. In 2014 I was diagnosed with MS by a neurologist who is an MS specialist and she said that my major event WAS that partial loss of feeling on the right half of my body and was my most concerning symptom. My brand of MS does not involve my vision, thankfully. Talk about myths and misconceptions…

  • Lori
    2 years ago

    I am so sorry you went through the same long diagnosis! I had been told I had so many things as my decline went on. I even qualified for SS disability even though I had no diagnosis. Every doctor I wwent to said “it has to be MS”. They did an MRI in 2006 in an open MRI machine because I found out I was claustrophobic when they tried to put me in the “real one” 🙁 and every doctor went by that MRI for years.

    FINALLY – I got to Dr. Samuel Hunter near Nashville, TN in 2012 and he sent me for a “real MRI” (with Valium support to get through it!) and there were lesions everywhere! He did the evoked potential which I failed magnificently. The tests validated ALL my symptoms. He did all the things that should have been done before. And he tracked my original “attack” back to 1987 (when I was 27 and a lumbar puncture was done on me that showed bands in the spinal fluid – but they were looking for menningitis so they ignored those findings!)

    But it was also too late. I’m in secondary progressive phase due to a lack of care all those years. It’s hard not to be frustrated and angry at all the doctors in the intervening years.

    My eldest daughter had been having the same symptoms as me and even went to the Mayo Clinic for diagnosis – but they never sent her to see a neurologist! Can you imagine? So after I was diagnosed, I begged her to go see Dr. Hunter and he validated that she also has MS.

    All I can say is don’t give up. If you KNOW something is wrong – keep trying to find someone who will listen and test you! Don’t let them tell you it is “all in your mind” (it is mostly in your brain!) or that you “are just overweight by a few pounds and that is affecting the nerved in your legs”. I have been told sooooo many things over those 25 years that you just can’t imagine my relief to FINALLY have a name for what was wrong. I actually started laughing when I was told. I was afrais that Dr. Hunter probably thought I had a screw loose at that point – but the nurse practitioner said that it is a very common emotional reaction. Relief at first to know – and then reality sets in a few days later. But just don’t give up tryingt o find out what is wrong.

  • Meagan Heidelberg moderator
    3 years ago

    Hi DarlaKaye,
    Thank you so much for sharing your story. So sorry to hear that the diagnosis took as long as it did. Seems as though you knew what was going on from the start! Every MS journey is different, and we thank you for sharing a part of yours. Thank you for being a part of our community,
    Meagan, MultipleSclerosis.net Team Member

  • marti
    4 years ago

    Recently my neurologist has been telling me my MS has “burned itself out” and “this happens as we age”. I have several other illnesses what can cause some of my symptoms and am trying to keep an open mind, but I feel just awful and worse every day. I kind of resented her saying that MS can “burn itself out”. I mean, it would be great if this could actually happen. Not a cure, but progress of a sort. I’d just like to know if this process is actually possible and what everyone else knows about it. Thanks

  • daanniem
    3 years ago

    My Neuro has said the same thing to me. She is the one who diagnosed my MS !!! My Ms was very active in the 90’s. Recently I had an episode of severe vertigo so bad that I retired from my job. I finally got back in to see my Neuro, and because I have no new lesions on my MRI she is saying “I may not have MS !!! She said the vertigo was not MS !!! I was diagnosed in 2003 I believe. I have been very stable for the past 10 Years, but I still have the same old symptoms. And My legs are still weak and do not have any stamina. I am very stable, but I don’t understand how she can undiagnose a disease she has diagnosed !

  • Leslie
    4 years ago

    Mine did the same thing to me, Marti. He said, “Seems that MS is behind you.” . . . After a bit of googling I discovered that this kind of assessment can’t be made until you’ve gone at least 15yrs without a relapse. I was only diagnosed conclusively in 2008, so it’s only been only 7 yrs, and my last relapse was 4 yrs ago. I blame it on the changes in the way healthcare specialists get paid. With the new healthcare regulations, if you are repeatedly seen for the same problem with each visit the Dr. gets paid less. If they deem you “cured” then the next visit registers as a new problem and they will get paid more. I think they’re trying to protect their income.

  • marti
    4 years ago

    Thanks Laura Kolaczkowski. That’s pretty much the way I feel. I think she believes that I’ve reached a plateau since my last MRI shows no new lesions or disease activity. But this woman is kind of a piece of work. She did say I still have MS. And yes, I have considered a new doctor for a long time. I just keep giving her another chance because I love her assistant so much. She understands MS so much better than the doctor. Has it in her family. But, I may start begging to see a different neuro. She showed me her model of the brain and said the lesions around the outside edges ( white matter? ) are not MS lesions, but just what we get as we get older. I’m not so sure since these showed up 13 years ago when I was 51 yrs old. Not old in my opinion. My legs are considerably weaker but she insists this is also aging. So far I haven’t found too many who have heard of this “burning itself out” stuff. Thanks again. Best to you.

  • Laura Kolaczkowski
    4 years ago

    I am so glad I didn’t have a sip of my morning coffee in my mouth as I read this – Because I would have spit it out everywhere as I scoffed out loud. I would venture a guess as to what your neuro might be trying to say but hasn’t done it quite right – it used to be before all the MS drugs were available the majority of us would progress from RRMS to SPMS over time. She might be trying to say that you are no longer experiencing relapses and remissions and your MS isn’t active that way any longer.

    Saying it burned itself out implies that it is gone, which we know is absolutely not the truth – MS doesn’t just go away as we age. That sure would be nice, wouldn’t it? Next time you see your neuro, ask her to explain what she means. And if she still feeds you nonsense, you might consider looking for a new neuro who understands MS. -Laura, moderator

  • Kathy Evans
    5 years ago

    I think I’d like a t-shirt that says, “NO, I’M NOT DRUNK – I HAVE MS!”
    Recently I bit off more than I could chew by walking several miles. On the way back, I was so crippled that I couldn’t even stand up straight, and I was staggering, and sometimes had to crawl on the ground. Most drivers passed me; I’m sure they assumed I was some kind of drunk. Finally a kind family pulled over and asked if they could help, and I explained my situation. They gave me a ride back to my hotel. To others I would like to say, please don’t assume that I’m drunk! I may actually need help!

  • Carolyn
    3 years ago

    I got pulled over by a cop (Highway Patrolman) at 5:15 a.m. who claimed that I neglected to stay in one lane. He proceeded to order me out of the car and do a “walk a straight line” test. I explained that I had MS, which he didn’t seem to understand. He did further tests of “follow my finger” which I failed because of a clinical Nystagmus. Then upon his conclusion that I was “under the influence” he demanded that I call my husband to pick me up! SIR! If you think I’ve been drinking, then smell my breath or give me a breathalizer test!

  • Lori
    4 years ago

    “Disease duds.com” (I think that’s right) has an MS shirt that says exactly that!

  • lachambless
    4 years ago

    I hear ya there! I was a horrible Alcoholic for 5 years and I never walked as bad as I do now! I’ve been sober for 4 years and look more like a drunk than I ever did! I’m glad you’re okay! Any lasting effectis from that walk?

  • lachambless
    4 years ago

    I hear ya there! I was a horrible Alcoholic for 5 years and I never walked as bad as I do now! I’ve been sober for 4 years and look more like a drunk than I ever did! I’m glad you’re okay! Any lasting effects from that walk?

  • Joybo
    5 years ago

    My personal fave: The misconception that goes along with the “But you look so good!” response we hear. The misconception that– because I did my hair, did my makeup, and don’t use walking aids… well what kind of disability is THAT? But I look so GOOD! I have no doubt I’m one of those people who is discussed in my absence.. “she’s on DISABIITY. Can you IMAGINE?” or “.. doesn’t look sick to me, how bad can it be?”
    But just like a diabetic, or one with lupus or a number of other diseases, MS’ers suffer in silence and sometimes look great in our suffering. Because you can’t see my vertigo, double vision, terrible coordination, spasticity and pain in my legs as they cramp into midnight PRETZELS… you think we’re just fine.
    Well, think what you will. Just keep it to yourself, ok?

    My own issues with this misconception has helped me to remember NOT to make assumptions about others; not to ‘assume’ but to offer help if it seems needed and to keep my mouth shut when a young “healthy” person jumps out of a Handicapped Parking Spot complete with hang tag in his car. How far CAN he walk without losing his breath or his legs? YOU KNOW NOTHING. Keep that in mind and we’ll all be the better for it. (thanks!)

  • meissie47
    3 years ago

    Joybo. I know you posted your response in 2013. But I’m new to this site. Oh my goodness I so identify with you!!! I’m in the midst of a disability claim and feel the exact same way!

    I’ve been told many times ..girl you don’t look like you feel bad or you sound good. I just wanna scream you have no clue! Thank you so much for posting what you did beca5Ive never seen anyone I can identify with in this way who’s on disability also.

    Thanks.

  • Alison
    5 years ago

    MS is an awful disease! It is a “fooler” to those who look at someone with MS and assume they must be “fine” because they look fine!How a person looks never can truly determine how that person with MS is feeling at that time! I think that most of the time I choose to be grateful that I am included in social situations…if I feel “nasty”…I am
    still happy to be out and about!

  • DianeD
    5 years ago

    I do not think this is helpful; it simply panders to the idea that you are not unique and lumps us into categories. While some of the info is right on, it is not possible to generalize about MS.

  • Living with MS since 2002. Keynote speaker for Women's Conferences and travels with my husband who is a country Christian recording artist. We do not get to choose what life gives us but we do get to choose how we handle the situation.
    5 years ago

    I too get tired of people expecting me to “look sick”. Therefore I really must not have MS and need another opinion! REALLY? I for one am glad that I don’t look how I feel. MS is an awful incurable disease that is raging throughout the bodies of millions of people. It does effect each one of us differently both physically and emotionally.

  • JoGandy
    5 years ago

    People thinking that MS affects everyone the same. I am SO tired of hearing “Well So and So has it and still can …….”

  • lachambless
    4 years ago

    So and so has it and they still run every day! You should run, it would be good for you! Grrrr… Okay I can barely walk, running is so out of the question!

  • Dave
    5 years ago

    Even people who I tell get caught in the trap, I FEEL GLUM

  • evantal
    5 years ago

    I hear this also and then I give them a look that I hope makes them realize just how stupid and hurtful their comment is. One of the most ridiculous comments I got was “My aunt has MS and she takes the bee stings and she feels wonderful”. Really! or “I read on the internet that a doctor in Sri Lanka has found a cure!” As we all know – everything you read on the internet is true!

  • DHarris
    5 years ago

    So true!!

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