Explaining MS Symptoms

Explaining MS Symptoms

I’m sure that you’ve had people ask you about your symptoms… friends, family, health care team, etc. That doesn’t seem like a ‘loaded’ question, but in all reality it is. We’ve probably found the symptoms we’re trying to explain at times, but the scientific name is too hard to remember, too hard to pronounce, etc.

However, one thing that I’ve come to notice is that just explaining the symptom… what it’s doing, what triggers it, etc. is VERY difficult to explain. I mean, especially when you have cognition issues… it’s like trying to explain something that you can’t find the words for.

For the longest time, my vision was affected from the get go… and I was trying to explain the symptom of my vision issue… but there just weren’t words to explain it besides… weird. Now, that doesn’t really narrow an MS symptom down, because most of them are all weird. Now that I’ve educated myself on MS and it’s symptoms, I can explain things a little better… but notice the key words… a little.

I once took a video of my leg, because it was freaking out. That’s the only way to describe it. My thigh was literally freaking out and it was like I had jumping beans inside my skin, and they were having a party in that certain area. My doctor loved my explanation of what was going on, for one, but showing him the video, which we can’t always do, because not all symptoms are visible… but he could tell from the video and my ‘odd’ description that I was dealing with tremor.

Not to mention when I sit there and even try to discuss things that I’ve noticed, or if I’m trying to describe my symptom to a friend, I get a big case of ‘cog-fog’ and have no idea what I’m trying to explain…. The words are in my head, but I can’t compute it to come out of my mouth. It’s the most frustrating thing to deal with!

I remember one time I was sitting there explaining to a friend about walking issues… and how it feels when your foot is asleep and you can’t wake it up because it’s lazy. Imagine dealing with that at random times due to MS? When it doesn’t just ‘wake up’ when you tell it to… I’ve had a full conversation with my foot before, encouraging it to wake up… in front of people… at least I’m providing entertainment?

So, the moral of this whole story is… when people ask us to ‘explain’ our symptoms that come with MS… it’s much easier said than done, on their part. Because it’s not easy to say on our part, that’s for sure.

Don’t take this as we don’t want to explain it to you, or that we don’t know what we’re talking about… there are just no words for the weird things that accompany multiple sclerosis. I mean, we can look up symptoms of MS, but the ‘definition’ doesn’t always match what we’re going through, so then we have to wonder… “What is it really? Is it multiple things at once? Is it something else besides MS?” There are so many different factors to take in to account, that it’s hard to get it all figured out! This doesn’t even cover the ‘embarrassing symptoms’ of MS… because who wants to share that publicly… but that’s a whole different story.

Anyways, that’s something that I had to deal with not too long ago, and thought I would share my frustration!

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Xoxo

Ashley Ringstaff

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Comments

View Comments (19)
  • JMeyer
    6 months ago

    I’ve come to the conclusion that the only way to explain it is you won’t get it unless you get it

  • chalknpens
    10 months ago

    I don’t try to explain anymore. If they can’t see it, they won’t understand it anyway.

  • Ashley Ringstaff moderator author
    8 months ago

    Very true. I’ve tried just for those that acted like they wanted to know, being genuine… but it’s exhausting at times.

    “You don’t get it, till you GET it.”

  • Debpat
    12 months ago

    I find it hard to tell Drs. my symptoms. I fin even they don’t exactly know what you are describing–some symptoms are hard to explain- you can’t understand unless you actually experience these symptoms!

  • Ashley Ringstaff moderator author
    12 months ago

    Very true! MS is already a very complex disease – and trying to describe it to an ‘outsider’ aka someone without MS is very difficult.

    xoxo
    Ashley Ringstaff

  • ASAPcindy
    12 months ago

    The only thing worse than MS it talking about it. I hate how people keep trying to find a hook on which to hang the symptom. Oh you’re tired, you must have over done it yesterday. Oh you fell and broke your glasses? You must have tripped over the rug. No, my body just does things for no reason. I fall because my foot won’t move when I tell it to. Accepting the randomness of it all is hard. If I am just a random cluster of atoms pinging through space what is the point? I guess because the alternative is worse. This is my only ticket to this rodeo and I’m hanging on to this horse as long as I can and giving it my best shot. If not for anybody else but me. But I sure hate talking about it.

  • Ashley Ringstaff moderator author
    12 months ago

    ASAPCindy,

    I hear you! I really really dislike people trying to ‘compare’ or diagnosis us when they have absolutely NO clue about medical advice.

    xoxo
    Ashley Ringstaff

  • BuckeyeCurt
    12 months ago

    Thank you! I’ve an appointment soon and was looking for some advice on describing cognitive issues I’m having to tell the doctor about.

  • Ashley Ringstaff moderator author
    12 months ago

    BuckeyeCurt,

    Hope you’re appointment goes well! Glad you enjoyed the article.

    xoxo
    Ashley Ringstaff

  • ericawilson
    12 months ago

    OMG YES! Thank you Ashley!!

  • Ashley Ringstaff moderator author
    12 months ago

    Erica Wilson,

    No problem. Glad you enjoyed the article.

    xoxo
    Ashley Ringstaff

  • nepatternmaker
    3 years ago

    I’ve told people it’s like the housing on an extension cord. When the cover get worn through the electricity can get out, instead of going where it’s supposed to. My nerve and electrical signals between my brain and pretty much anywhere in my body don’t go where they’re sent because the cable housing is damaged. I’ve also had people ask my how long it will be before my vision gets better so I can drive myself. Uh, it’s not going to, might get worse though.

  • Ashley Ringstaff moderator author
    12 months ago

    nepatternmaker,

    Very good example, I love it.
    I’ve used the ‘cord’ example before, but not exactly like you explained. Hope all is well.

    xoxo
    Ashley Ringstaff

  • Erin Rush moderator
    3 years ago

    That’s a great description that people can really visualize, nepatternmaker! Thanks for sharing it with the community. Who knows? Others here might start using it to describe their MS to people who just don’t understand what it is and what it does to a person. Thanks again for sharing! Best, Erin, MultipleSclerosis.net Team Member.

  • Jeannee
    3 years ago

    Yes, yes, yes! For a couple of years, I had been telling my primary care that sometimes my feet would roll …they would just go side to side, all by themselves, and I would need to grab something stable to hold on to. She literally said to me, “I don’t know what that is.” Neither did I. Now, understand me – I like her alot & don’t want to change doctors – that said — when the light started dawning on me, & I went in with a list of symptoms … she was very apologetic BECAUSE in her training, it was called “unsteady gait” – and I wasn’t using that exact phrase. Who talks like that?!

  • Ashley Ringstaff moderator author
    12 months ago

    Jeannee,

    From personal experience, there seem to be physicians out there that speak either only medical terms… or there are some that don’t like it when you try to speak ‘their language’. It’s annoying. I completely understand what you’re saying… I’m glad to hear that you like your doctor, but I personally would have been really annoyed.
    Hope you’re GAIT is better.

    xoxo
    Ashley Ringstaff

  • mascha
    3 years ago

    Thank you 🙂

  • Matt Allen G
    3 years ago

    For me, the technical terms are easy but actually explaining what certain things feel like so that anyone can understand? That is hard. It’s like trying to describe a color that no one else can see, a color not made of red, blue or yellow; if you don’t have the PHYSICAL capability to see it you can never be told exactly what it is. I know many of the technical terms for what is going on with my vision right now but I just do not have the vocabulary to properly put it into words, trying to explain what I see sometimes feels like trying to convert a color into sound, it just doesn’t work that way…

  • mascha
    3 years ago

    🙂 thank you bloggers for great information

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