It’s The Worst MS Symptom. Do You Have It?

It’s The Worst MS Symptom.

Two weeks ago, I had a really good day. Not just a good day, a good MS day. This was kind of a big deal, because for the past few years, almost all the fluctuations of my MS have been towards a worsening of symptoms; the pendulum almost never swings toward improvement anymore. I struggle to feel grateful for stability at the best of times, and for slower progression the rest of the time. 

But then, two weeks ago, in the gym with my awesome physiotherapist, Megan, we were both pretty surprised at how my hip flexors were performing. My balance seemed better than normal too. I’d been intending to budget my energy in anticipation of a busier than average day, but suddenly felt strong enough to party like it was nine months ago. I powered through a full workout instead.

That evening, The Banker and I went to Toronto’s massive Christmas Market in the historic distillery district. It’s a popular place, with crowds and cobblestones to negotiate, but I was bent on sipping cider and seeing the 50 ft. tree. I wanted to wander through the light tunnel and see for myself what kind of people actually traipse around gnawing on massive turkey legs. We took Optimus Prime, my badass convertible rollator/transport chair, because my plan was to walk as long as possible, knowing eventually I’d need a push.
And then I didn’t.
With one little break to sit and look at the enormous tree, I spent the rest of the evening on my feet. And I was stunned and happy and hopeful about how much stamina I’d had. Was my ketogenic diet finally kicking in? Was my increased strength because I’d recently given up sugar and dairy? Has the biotin I’ve been shelling out for over the last year finally paid off?
I’m not one to find something where there’s nothing. At the end of the day, I’m a realist. But any little improvement when you’re doing everything you can just to slow down decline can feel like a massive win. And, I felt like it deserved to be acknowledged.
So I said it out loud. 
Which was obviously a mistake. 
Two days later, I tried to ignore the weird feeling I woke up with on my head. Like I was wearing a hat. And then, the burning nerve pain that usually hangs out in my feet, started showing up in patches on my legs, and my hip, even though I’d stopped eating gluten a full 6 weeks ago. In my experience, new patches of nerve pain are often the first sign that the beast is waking up. Still, I didn’t freak out.
Two days after that, it was time to check in with my physiotherapist, and do a timed, 2-minute walk test; a standard, if surprisingly unsophisticated, measure of worsening disease in the MS world. I gripped my walking sticks, and tried to go as fast as possible without actually falling. I was in a race against my own decline, and I was desperate to get even one step farther than I had during the last test. But nobody watching me lumber along would have ever guessed I was in any kind of hurry, let alone what felt to me like running for my life. 
When Megan’s phone finally beeped to indicate my two minutes were up, I was nowhere near my goal. In fact, I’d lost about 20% of the ground I’d been able to cover since we’d last tested a few months ago. My heart sank with that familiar feeling. Progression. 
Then, 3 days ago, I met a friend for lunch. The Banker dropped me off, and knowing I only had to travel from the car to the table and back, I opted to bring my cane rather than my rollator. I knew it would only be a handful of steps, and sometimes the rollator can feel like such a pain in the ass. My friend and I had a lovely, productive lunch. Afterwards, I almost made it safely to the car. In fact, I was so close to the car that as I went down, I really hoped it would be what would break my fall. Alas, it was the sidewalk that caught me. And my face. 
Oh, hey, it’s cool. I’m just gonna hang out on the ground for a bit.
Since then I’ve been replaying the walking test and the stupid fall, over and over again in my head. What happened to my good day? Why are my hip flexors still kicking ass while my right foot has just decided to stop trying? 
Is this because I forgot what beer is made of, and had half a bottle of Stella last week?
Last night I was more preoccupied than usual, thinking about this failing body, trying to be grateful for what it can still do. As I was rubbing my feet in my nightly attempt to get them to feel something other than constant burning, The Banker, seeing that I was in distress, asked me, “What’s your worst symptom right now?”.
I didn’t even have to think about it. “Fear”, I said. It’s always fear. 

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52 thoughts on “It’s The Worst MS Symptom. Do You Have It?

  1. I agree With Fear but for me frustration is a close second. I'm having a rough day (rough for my but no comparison to yours) myself today and I also question whether it was the gluten or late nights on my little weekend getaway that put me over the edge. ughh. stupid ms. Carrie

      1. Me too. I have probably had MS since 1998/9. I used to run 11 learning centres, have to look after 52 teachers, i never stopped working. I was hit in 2000 with blindness (temporary), then the usual happened and it took until 2016 to be told I had PPMS. Now I get so frustrated when I type and read back and its nonsense, I cant spell anymore, or find words I want. A simple task to make something is mind blowing.

        I just want to do things is that so difficult. Yes it is. But I wont let it beat me. No way. I was drawn to the blog by the heading TRIPPING ON AIR. I have done that was one of my first symptoms. Going to supermarket and ending upside down in a freezer lol. Yep I tripped on air and went flying head long into a freezer lol. I dont have fear with MS actually find I laugh more at myself now.

  2. F ms sista. I know the symptoms are real but you are stronger, mentally and physically at times. Fear is the only thing that will slow you down so f fear as well! As long as you fight that feeling, you will win! Not great words of advice but I'm ready to stand beside you and fight fear with you! What ever it takes/means !

  3. Hi, yes I agree 🙂 Went to a wedding this past weekend where we stayed in a hotel, got the handicapped suite, which was pretty good EXCEPT they had a desk chair with wheels and NO ARMS, on a laminate floor. While my son and husband went to get the luggage I thought I would have a seat. Well, I did – on the floor! Chair went right out from under me, and I ended up crashing! Took one in front of me and one behind to get me up

  4. Yes, the fear is the worst. It can be almost as crippling as the physical symptoms. I get anxious from every new twitch or tingle I feel. I try not to be afraid of what our dear companion has in store for me next, but the fear always sits at the back of my mind, lurking.

    On a positive note: I do so love your blog. Much love from Germany.

  5. ��Sorry to read of your fall, even more so of your short lived hopefulness- now that is a let down! Your face plant is easier to clean up for sure than the fear ignited by your , 2 steps forward, one face down, ( sorry, could not resist ��). Rest up, be kind to yourself, indulge, ( no cheese??), strap on your seat belt & do what you do so well- ride that roller coaster like only you can! – With flair, style, truth & the grace to share with your faithful, ‘Trippers’.
    Merry Christmas to you & the Banker! P. S. Throw some glitter on those bruises, glam girl!��

  6. It's so hard to balance the good things in life (like weekends away, delicious gluten, and let's face it – wine) with being a full-time health obsessive. Stupid MS, indeed.

  7. Aw, girl, it’s just the disease. It’s what it DOES. It messes with you. Be proactive with your physical self. Put the cane away. You are beyond it. Acceptance is the antidote to some fear, certainly not all. This disease steels you.

  8. Remember, a guy who was crippled with polio famously said, "the only thing to fear is fear itself." Of course, at the time he was talking to a nation made up primarily of paupers, and an empty bank account, while distressing, it's a lot easier to fix than a broken nervous system.

    Also, polio – while horrible – isn't a progressive disease. This damned MS, though, leaves one in a perpetual state of uncertainty, as it's very difficult to accept whatever losses one has already suffered because more seem surely to follow. Hard to accept something that's a moving target. This thing doesn't only mess with your body but with your mind and emotions as well.

    Regarding your diet, I too have attempted to go gluten free for several months now. Also, at times, have gone sugar and dairy free, and about every six weeks I do a Fasting Mimicking Diet. Have any of these things made a difference, at least so far? Unfortunately, no, but they do make you feel like you are doing something to fight back. And I know some folks for whom restricted diets have appeared to bring about improvements.

    If possible, you should get yourself tested for food intolerances. I firmly believe that every MS patient should be tested for celiac disease, as the symptoms of celiac can often mimic MS, and it's also a fairly common comorbidity with MS. Patients with celiac respond dramatically to gluten-free diets, and are perhaps the ones that should stick to that particular restriction. Just saying…

    My issues with the diets at this point is that eating scrumptious foods is one of the few pleasures left to me. I have some degree of confidence that whatever diet I stick to may bring some sort of incremental slowing of my progression, but I really don't expect miracles. Is depriving myself of gastronomic pleasures worth it? A question I ponder daily…

  9. F MS indeed. I am also an MSer from the GTA and I have been debating on whether or not I could handle one of the Christmas Markets. I gave up sugar and anything white (bread, potatoes [sigh], etc) and lost 60 pounds about 2 years ago. I also had the best year or so of my life since my diagnosis as a result. I had so much energy, less pain, vision improved, etc. I was fine even when I fell off the wagon…for a while. Then, it hit me hard. I was suddenly in excruciating pain, all the time, and the fatigue was overwhelming me. This summer, I was doing some volunteer work at the U2 concert which required me to be on my feet for several hours. That day has resulted in the permanent loss of feeling in several spots on my leg and thigh. I can't stand in one place for too long without the pain becoming overwhelming. And numbness. (but I would do it all over again for U2! Lol). I wish you nothing but good health and happiness from here on out. Please feel free to give me a shout if you need to vent to a local lol

  10. Marc,

    You're so right about the moving target. Most of the time I think I've done a pretty good job of accepting what's lost (vision/driving, career/singing, the whole pee thing, and even the walker/part-time transport chair). I tell myself that if I've been able to accept these things (which I never thought I would), then I will be able to accept what's coming. But, damn it's hard to live in the present when the future is more of a threat than a promise.

    Thanks for the advice on celiac. As a control freak, I'm mostly enjoying this diet. And I'm pretty good at coming up with tasty alternatives. My rule is that if I'm truly tempted from time to time I will give in without regret. So far, the hope that this could help has been stronger than any food cravings. That said, there may be a croissant or a bagel in my near future. Whatever this does of doesn't do for MS, I'm at least reducing my risk for other diseases. I do believe that food is medicine, but I don't actually believe I fell because I drank that beer.

  11. Thanks for reaching out, Tanya. Congrats on your weight loss. Do you think you'll give up the white stuff again?

    I saw U2 in TO years ago and it was amazing.

    Tanya, can you message me if you love and would recommend your neuro? I'm losing mine to the States so I'm trying to do some recon on who's good at St Mikes.

  12. Sorry to hear about your fall; I hope you're feeling better. I guess fear is with all of us with MS – one way or another. The way I see it – the diets are valuable, but much more difficult if you are physically "challenged". I cook my own food (well, 95% of it) and it's a lot less fun in the kitchen with a walker in tow. I often feel as if I'm pushing a baby stroller out of the way!!
    I think my bigger quandary is sadness; sadness over the losses that have already happened. I started ballet school at the age of 6 and was dancing all through my college years. Not professionally, just a part of my life. After all these years of MS I still miss it. But, I get to be seriously grateful for the bit of yoga I can still do!
    Marc is right – MS IS a moving target, and often if I think one thing is better on a particular day – WHAM, something else is taking a dive. I wish wish wish MS were easier to deal with!

  13. Nailed it. Interesting that you feel better when fasting. Me too, though I have to be careful not to get too light. Your blog has become part ot my morning routine.

  14. I just starting reading your blogs and love them! This one made me cry because I see I’m not the only stubborn ass with MS. I have been in this situation, also. Hip flexors feeling great and making me walk better, I can walk without my cane, wear sexy shoes and not tennies and BAM-being helped up off the floor and sitting down. Trying to look normal hurts

  15. I feel your loss daily and used to worry about my progression. Now I accept that if I overdo it when I feel great, the next day, week or month/s that I will pay for that activity. Must carefully pick and choose what I will do knowing in advance I will be wiped out afterwards, planning ahead so I have cooked food and drinks made up for those days I cannot move much. This is life for me.

  16. I've just been reading the comments and replies above and am feeling relatively shitty. Recently diagnosed and feeling the pain. Currently medicated but wondering if this is as good as it gets or will it get worse and so I should be grateful at this time. Woe is me today, but not always.

  17. This blog, these comments…they are moments in time, snapshots of what we go through. It's important to process these feelings of frustration and loss and fear but we can't live in them for too long. Hang in there. The time after diagnosis can be such a minefield. MS is tough, but it doesn't mean you won't have a beautiful life.

  18. I hope you let the hotel know that was unacceptable. People that don’t have disabilities just can’t understand what we have to go through and obviously didn’t think that one through. I hope you weren’t hurt!

  19. It's like you're writing about me…I'm moving so I can have tea with someone who understands the frustration of MS and won't tease me when I get my tea to go so the lid minimizes spillage. Also someone who won't accept all my cancellations from fatigue or pain or whatever…sometimes they'll just get in bed too, right? ����
    I'm sorry it's been a hard day…��

  20. I totally get it
    It’s great that you aren’t giving up and yes it does suck that you ( and I ) have ms
    Keep on trying!
    What else can we do
    Hope hope hope! 🙂

  21. I didn’t have to read the article. Fear was the first thing that came to mind. It’s a tough one to treat too. I’m feeling that pulsating electric swelling in my head the last four days. I guess it’s no coincidence I stumbled across this post. I too have been trying to pretend it isn’t a big event coming down the pike…. Even though I see all my symptoms increasing/returning. I’ve lost 100lbs keto the past 2 and a half years (maintained a year and a half) I meditate yoga physio.. All the things…. But the fear is always there because as soon as you start to feel you’re on even keel…. The ship capsizes and you need to relearn to swim.

    1. Thanks for sharing this, Candice. The thing that comforts me about this symptom is that in recognizing it, and even thinking of it as a symptom, I can try to do something about it. I’m afraid of losing all my mobility of course, but when I realize my fear of losing mobility is actually worse than the loss of mobility, I can start to deal with the fear. Maybe. Does that make sense?

      I dunno. But, well done on keto. That’s fantastic and I know that as someone who also tries to ‘do all things’ it can be discouraging when we still struggle with symptoms and decline, but it’s not hard for me to imagine how much worse this would be if I did nothing.

  22. Ugh so needed this!! As this stupid F’ing disease moves on in me the FEAR is debilitating at moments. And then for me it’s the blame on myself…for what I did or didn’t eat, for what I did or didn’t drink, for not taking my supplements, for not exercising that day, for having that cigarette when I was 22 and young and stupid and couldn’t see my MS coming!! Because clearly these are the reasons that this is progressing…couldn’t possibly be that this is just what this monster is and is no way my fault, ugh!!! Working to be better and kinder to myself but man is that hard. Your voice and sharing so candidly helps tremendously so THANK YOU?

  23. Hi Ardra

    It’s rather sad when we start to measure our progress by the number of falls we have had. I still remember one of my early stumbles because it wasn’t even a fall as such.

    I had been to the local shop to buy a sandwich for lunch and as I was crossing the road to return to my car – my legs just turned to jelly and I sank to the ground. In the middle of the road. Fortunately the traffic was light at the time, so I didn’t get squished by a big truck.

    Now that I think about it, this may have been what prompted me to get checked for MS.

  24. I am with everyone, I have Progressive MS so I was told but no pain, have done all the right things no sugar, white bread etc and now am taking Dr JOEL WALLACH’S 90 nutrients and starting to feel I am walking a little better trying not to use the walker as much so will keep taking them, does take a little time to work but pleased I started. So if this might be a help to anyone please check him out on GOOGLE. All the best to everyone my Prayers are with you. Ann Kennedy

  25. I just started reading your blog after the Barlo live stream last night.
    I was told 20 years ago by a neurologist that the pain I was feeling wasn’t MS because it doesn’t cause pain just numbness! Sometimes the pain and frustration makes me weep.
    Also I made a new year’s resolution to stop swearing. The exception is getting dressed. It gets a pass.
    Loving the blog.

    1. Hi Jackie,

      I remember being told MS doesn’t cause pain also. Thank god things have changed since then.

      Thanks for your kind words about the blog. I hope the time you spend on my site doesn’t railroad your resolution.


  26. I find that when I feel really ambitious and good one day, like I can tackle anything, the next day I’m wiped and can barely tackle making dinner for my kids. As a single mom, 23 years with this disease and I’m still learning so much about myself – new symptoms that can spring up as I get older especially. It’s a reminder everyday to practice self-patience, self-love, and self-compassion more than the self-regret and self-hate. There’s nothing wrong with taking time to be selfish, but I do have to remind myself that I’m worthy to do so! Hugs to all!

  27. At least my MS fear helped me be more fearless with breast cancer. I told my whole cancer team that my mantra is “I can beat cancer but I can’t beat MS. This I can do.” I recently told my new neurologist of this “wisdom” and he wasn’t having it: “You can do a LOT for MS these days,” he said. The better wisdom may have come from my cancer surgeon who, in listening to my fears about recurrence, said: “It’s like you’re in a marriage with your body. It went and cheated on you with some strange disease and now you have trust issues.” Yup, I have lots of trust issues and they do lead to fear. My vote for the second-worst symptom is “invisibility,” as in “No one would ever know–you look so well!” I heard this very comment at a recent gathering where I had to admit heavy fatigue is catching up with me but I have heard it before. Thank you for a space where we can share these thoughts with people who actually know what you mean!

  28. I was married and we got divorced and it wasn’t because of my M.S either. It was because we fell out of Love. He was a great man and I should’ve stuck around but it wasn’t fair to him and then I moved in with my Mom and we are best friends and when she had surgery one time, my sister came to me and told me that my Mom wants me to go to a Nursing Home so my sister could take care of my Mom and my Sister didn’t want to take care of both of us.
    So I went to the Nursing Home and when my Mom got out of the Hospital, My Mom asked where I was and my sister told her she put me in the Nursing Home so that my sister could take care of her.
    Low and behold my sister hardly goes to my Mom’s house anymore and to find out about it the true reason why my sister put me in the Nursing Home was because she was jealous of me. Now I live with my Mom again because Nobody could ever break the bond between me and my Mom and my Mom has less Love now because of what she did. She deserves everything she got.
    My Mom gives me strength every day and She’s always supportive of me. I’m doing good now.
    Before I was in a wheelchair and now I’m walking around again thanks for the support and love from my friend and my Mom.

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