MS Symptoms Are Weird




MS symptoms are weird.  There’s no rhyme or reason to them – how they manifest, how long they’ll stay.  It’s day to day – hour to hour – minute to minute.  It really can and does change that fast.  I’ve woken up in the morning and felt great, and by the time I’ve gotten to the bottom of the steps been in excruciating pain with weakness and could only make it the sofa.  I’ve woken up in the morning with that familiar ache, the all over pain that is most often felt the morning after a shot.  I’ve had my vision double, Bell’s Palsy, slurred speech, incredible “cog fog” (cognitive deficiencies) and blinding “lightning shots” of pain from one side of body to the other.  I’ve actually gone 10 days without a single symptom.  WEIRD!  It sure makes you flexible though – and able to leap tall problems in a single bound!

I’ve had a weird symptom lately.  It started 4 months ago with a twitch, just under my left eye.  It was bothersome, but no big deal, really.  After about 3 months, it started to involve that side of my face and my neck.  It pulled up so hard one night, in fact, it woke me up.  I felt like the Joker from the Batman movie with only one side of my mouth in a scary smile!  This, I’ve now come to understand, is called “Hemifacial Spasm”.  Hemi – meaning 1/2 (as in hemisphere) and obviously facial meaning regarding the face.  Spasm – that’s right – twitching or tightening of the muscles.  It’s really about the nerves though.  Whatever!  It’s description and biomechanical function isn’t the thrust of this post.  It’s just that it’s WEIRD!  Just yesterday, I started hearing sounds in my left ear, that correspond with the spasm.  It’s like faraway fireworks set to “dance” along with the music.  I’m lucky enough to get to chat with people all over the world these days, through this website, the FUMS Facebook page and the FUMS Twitter account.  I’ve heard some WEIRD symptoms – and received an inordinate amount of understanding and support for my WEIRD symptoms.  It’s a great use of the various mediums.  I’d like to continue that practice:  let’s share our WEIRD symptoms and any tips and tricks that we may “stumble upon” (sorry, MS’ers, couldn’t resist).  For instance, when I mentioned the Hemifacial Spasm, a TON of people responded saying they had the same thing, but didn’t have a name for it.  Several people suggested various massage techniques that I could try on myself and one kind soul told me of her success with drinking quinine in tonic water.  I’ll just add a little gin to that and probably feel quite a bit better myself!!

So please, let’s hear your WEIRD symptoms and how you’ve dealt with them.  You could make a difference in someone’s life.  MS gives us lots of challenges – now it can give us an opportunity – to help others – too!

MY BEST TIP:  Talk to your disease everyday – so it knows who’s boss.  Tell it: FUMS!


I must confess, it helps the stress, to say, today, FUMS!!

6 thoughts on “MS Symptoms Are Weird”

  1. Well said, Kathy! Most of us are aware that each MS person has unique, varying and sometimes “interesting” symptoms, from mild to devastating, from painful to amusing.
    Seems there’s a pill for every symptom and a side-effect from every pill.
    I feel like a “mad scientist” some days deciding what “mix” of pills suit “today’s” MS. There’s the four REGULAR ones in the morning, the supplements in the afternoon, the selection of others depending on what ails me.

    ANYWAY, I look forward to the day when the “F” in “FUMS” can represent the word ‘FORGET’, when it’s no longer an issue, when there’s a real cure for that which robs us of so much of our lives every day.
    Thanks for all your great posts.

  2. I found it interesting as I read this to be able to equate some of what you have to deal with. Obviously not to the extent of your experiences, thank goodness, but aging has a lot of similar symptoms.

    You wake up in the morning, after having been up 5 – 6 times during the evening because you either have to change positions because something hurts, or you have to make your way to the bathroom, and you try to get up. You walk around hunched over, holding your back until you finally stand as erect as you can. That’s about an inch shorter than you used to be.

    Then there is the “cog fog”. What was I doing, why was I going in this room? Did I take my pills this morning?

    My heart goes out to each of you who suffer through this awful disease. Those of us who have been lucky enough to escape it’s ugly hold can use some of our own experiences to help us get a basic understanding of what you face every day.

    I’m so lucky to have my sister to help me understand this disease. I only wish there was something I could do to make it better.

  3. I shrug off another chill, though the fireplace burns brightly.

    always happens against my will, and it seems to happen nightly.

    It’s not that I am all that cold, just bored and all alone..

    And warmth of body, mind, and soul seem to have found another home.

    Half way down the path of life I turn to check my progress,

    It seems I started off with more, and face old age with less.

    Somewhere in the daily grind I lost much of my focus

    And now I’m faced with daily plagues much worse than frogs and locusts.

    I awake with a start, be still my heart, my legs are both on fire!

    No flames to see, Lord why me, just my brain saying things are dire.

    The morning sun starts its daily run, but I can’t rise to greet her.

    So I lie in bed, covers on my head, and wonder about my future.

    Every day brings a new surprise, always a new sensation.

    Sometimes its like a silenced cell, sometimes a harsh revelation.

    A guessing game I play each day, is it pain or devestation?

    and sometimes i feel I just cant eat, til i’m right there at starvation.

    And when things are right, I can act it out, as if there’s nothing wrong.

    I can take on that days challenges, smile and sing a happy song.

    But when my body fights against itself in a war I’ll surely lose,

    My options and my choices narrow and I don’t get to choose.

    The pain sometimes, it gets to me, Though I wear my smiley faces.

    The hot, the cold, the needles, the nails…effectively erases.

    Oh I’ll fight through, I always do, and I’ll be back at the ready.

    May have to bring my trusty cane to keep me up and steady.

    My journey, it goes on my friends, as each day passes by.

    My troubles do not outweigh yours, nor do yours outweigh mine.

    For we all must bear our crosses friends, to earn our place in Heaven

    And there are mansions there that bear our names, mine, it just says Kevin.

    Though my lot in life was not my choice, and not what I would have chosen

    I still believe in God’s Creation, and not some big explosion.

    I still believe in my Messiah, His Life, His Walk, His passing.

    And I still believe He rose again for our lives everlasting!

    —Kevin Young

    We all fight our battles. Fight them for Christ! Love Y’all!

  4. It doesn’t matter, day to day.

    Cause I will always be this way.

    If you are comfortable with that

    then that is that.

    I just don’t get to decide,

    if I walk, or limp, or ride.

    If you are comfortable with that

    then that is that.

    But don’t forget there will always be

    Something missing in the heart of me.

    And I pray to God each day to fill that hole.

    And though I try to live each day

    Like things are great in every way,

    Sometimes I only pray that He would make me whole.

    Cause, all I can be is all I can be.

    I pray every day He will make the most of me.

    I’m a father and son and a leader of men

    Do my best every day, kneel and pray again.

    And when I’ve gone as far as I can go,

    He will take me farther, that I know.

    Cause He puts friends with good hearts around me

    To let me know they all still love me…that He will always love me!

  5. I am up every night nmerous times to piddle. at least every hour and a half. and it doesnt matter the sleep aid (or none). trying to stay away from caffiene doesnt seem to matter. HELP!

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