Surprise… it’s a new multiple sclerosis symptom

I love surprises. Well, the good kind of surprises. Things like an unexpected gift, a found 5 dollar bill in your jeans pocket that you didn’t know was there, a pay-it-forward drink at the coffee shop, or waking up to a clean kitchen that you left dirty before going to bed. I welcome those kinds of surprises any day of the week.

The kind I don’t like, especially with multiple sclerosis, are the sudden new symptoms that just show up out of the blue and then never go away. That’s always how mine seem to happen.

Since last week a numbness has been increasing across the upper left side of my face and head. It is to the point now that I can’t feel a part of my forehead and even my left eyeball. It’s kind of weird being numb there, almost like someone gave me a shot at the dentist to numb my mouth only they missed my mouth and injected it into my head instead.

Thankfully I can still blink my eye and move the muscles in my face, but it sure is strange to rub that part of my face and not feel it. I find myself being extra cautious when I do so I don’t accidentally scratch myself.

I’m sure the doctor will put me on a round of steroids to slow down the unwelcome activity in my brain that is causing this new surprise. I would love it if MS would just take a vacation already. Better yet, if while on vacation it got eaten by a shark, hit by an astroid and then vaporized in a sudden explosive lava flow. (You can’t be too cautious in wishing for just one disaster to happen.)

But, since that won’t be happening any time soon I am going to have to get used to my new normal. You’d think I’d be used to doing that by now. Trust me, you never get there. From the onset of MS in my life I have had to deal with some crazy symptoms. Things like ringing in my ears, swallowing difficulties, a decrease in color clarity in my vision, and muscles that twitch and seem to have a mind of their own.

My hope is that this new symptom with subside soon but if it doesn’t, that I will be able to work around the discomfort and new weirdness I’m experiencing. Sometimes that kind of thing is easy to do but sometimes it has this way of rocking your world and taking you to a place you really don’t want to go.

I’ve already had my moment of tears, my cry in the shower time of me washing my tears down the drain. If only I could wash my MS symptoms away as easily as that. But regardless of everything that is happening in my life, I’m going to keep pushing through. You have to do the same thing. Don’t let new progression, new symptoms, or new changes keep you down.

Even though I don’t personally know you, I can tell you that I genuinely love you and that everything is truly going to be okay. I mean that. Don’t allow yourself to become overwhelmed by the changes in your life or the journey you find yourself facing. I’m hoping with you for a better tomorrow.

MS Gets on My NervesMS WarriorMS Superhero


10 replies
  1. Janet Stanzel
    Janet Stanzel says:

    Thank you! Thank you!Thank you! I love reading your posts and everyone’s comments. 🤗🤗🤗
    So reassuring to read and to know that I am not alone.
    MS can sometimes be such a lonely disease when friends and family just don’t really understand what it’s really like. They see me as my old cheerful, happy, full of never ending energy self and don’t comprehend or acknowledge my sometimes crazy annoying symptoms that have slowed me to a snail’s pace some days. My body doesn’t act the way it did in years past but I will not let MS take my spirit away! 😊
    I sometimes wish that they could spend a day in my shoes, maybe then they’d finally get how hard things are somedays.
    Loneliness is the worst since nobody visits, nobody ever calls. I sometimes feel they think I am contagious.
    I was diagnosed with RRMS in 2005 and have been on disability for 6 years now. Last fall after seeing some very visible progression like bladder issues, fatigue & weakness, numbness and vertigo to name a few as well as walking issues that now requires use of a cane when out of the house . My neurologist confirmed that I am now in secondary progressive MS. Some days, when things are really bad, I use my trusty rollator walker.
    My husband and two children help me a lot but I often feel guilty that I have to depend on them sometimes for the simplest tasks that I can’t complete on my own. 😞
    I too have had my fair share of cries in the shower. My husband has cried with me too. I miss the old me who used to not that long ago, wake on a Sunday morning and go for a five kilometre jog while everyone was still sleeping. Now I can barely walk to the mailbox to check for mail.
    I had a fall detection system installed in the spring after a few bad falls resulting in bruises, split lip/chin and some not so pretty scars. This offers my husband and children some much needed stress relief. They worry when I am home alone and make many phone calls and texts home when they are at work or school to check on me. I am grateful for those calls and texts as well as your posts. It’s reassuring to know that I am not completely alone in this journey. 😊

  2. Gale Langseth Vester
    Gale Langseth Vester says:

    Your talk about washing your tears down the drain reminded me of the song from the musical ‘South Pacific’, “I’m Gonna Wash That Man Right Outa My Hair”, although a slight change to the lyrics is needed, so it becomes “I’m Gonna Wash MS Right Outa My Hair”!

  3. Paula
    Paula says:

    Like Judith N. I am an MS vet at 66…
    30 years since onset. So glad to find my pod people…I say we are really swans with humor. We will need it.

    • Peggy
      Peggy says:

      So appropriate…my layest ‘new’ symptom is dizziness/ vertigo. Thought was the Gabapentin take for shaking/tremors in feet/legs so weaned off but niw thats back too! Oh what joy in having a room spinning! And shaking of feet! At least for the moment not having Tigernarmal Nerve pain…but that may come back (and has) suddenly!

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope I have had this mess for almost 19 years and still learning new things to live with. Like where to put your foot on the footplates on the wheelchair so you don’t interfere with the front wheels when they turn, It can be fun sometimes

  5. Charlotte
    Charlotte says:

    I had the same exact symptoms early on with my MS. I would take a shower and the water on the numb side felt so weird compared to the other. I kept poking my face to see if it was going away. I talked to my neuro ophthalmologist and told him it felt like getting a numbing shot at the dentist and felt like it was wearing off, but still at the tingly stage. He loved that description because he could relate to it. That feeling lasted a couple of months and it was gone. I pray your numbness will go away also. GOD bless and look over you.

    • cassie howell
      cassie howell says:

      Charlotte, that is EXACTLY how I described MY numbness! Lol…And yes, how strange it felt in the shower. It became so annoying. That feeling on the majority of the entire right side of my body was the final symptom that led to me being dx, after years of other seemingly random symptoms, of course! It’s only been 3 yrs since my dx so I’m just learning how to navigate through all this. I’m still a bit in denial however. I actually have anxiety for the day my Neuro is going to tell me they’ve made a mistake and I don’t really have MS. Then I’ll be back at square one again. I am “so sure” this day is coming. I am an incredibly logical and sane person, so I find it quite bizarre that I feel this way…..I tell myself that just one more relapse and I’ll really believe it (2 additional relapses later)….

  6. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    Sending back all the love and a huge hug and a constant stream of good things now and always.

  7. Judith Norris
    Judith Norris says:

    How delightful! Your positive use of humor and pathos gives me a bright spot to read when I see Postive Living with MS. Since I am a 62 year MS survivor, it’s terrific to read your comments. Thank you.

    Would it be possible for us to have a conversation? I am a freelance writer. My first niche is Healthcare. I want to write about my experiences with MS during the past 60+ years, offer advice, support, and more..

    Do you have a LinkedIn profile? Did you build your website yourself? The colors, simplicity, logo, and footnote information; all wonderful!!


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