March is MS Awareness month, and for the occasion Dizzy and I have put together a list of our five more unusual/strange symptoms. The ones that remind us of just how weird MS really is… 🙂
- Some days our phone vibrates all day in our pocket, making Dizzy feel a very popular donkey, to then see that we have no messages. Not even one little one.
2. It’s been so long since I’ve been able to feel the tips of my toes, that it’s a surprise on the days I can feel them.
3. Needing to pee about 5 times before I can get to sleep… and then taking an hour to pee! Sometimes I can play two games of chess while waiting…
But on the positive, I am getting good at chess! I’ll be able to beat Dizzy one day at this rate! 🙂
4. Random words. These appear a lot. I know exactly what I want to say and then another random word just pops out. I even know it’s wrong as soon as I’ve said it!
5. There are some rare moments when I feel full of energy – I’m ready to run a marathon, climb a mountain, swim across the sea (and I can’t eve swim)… but as soon as I’ve thought these things, I’m sleepy again and need to tuck myself back up into bed. 🙂
What are the strangest symptoms you experience? Are any of them the same as ours? 🙂 xxx
I am the same. My brain 🧠 wants me to be so active, but in reality I can barely motivate myself to pick the oranges 🍊 in the front yard.
I know the feeling. It’s so frustrating because you want to do more! xx I hope you’re doing ok, and that you had a lovely Easter. 🙂 xxx
#3 – I have false signals, too. It’s difficult to know which ones to ignore. Skin itching for no apparent reason is another one of my strange symptoms.
I went through a phase of that, but luckily it then disappeared. The phone buzzing feeling has preserved though. MS is so strange! xxx
those are very annoying symptoms. Stay safe Xox
Thank you x I hope you are doing ok xxx
I don’t have MS but I do have to pee 2 times before I go to bed . Since I had surgery for colorectal cancer I have to really PUSH down to get any pee out and then do a kegels PULLUP and stop the flow. Then PUSH down again. Up down Up down ! It does take more time than a normal pee but I would not be able to play chess while doing it. That may be more info than you need. The surgeons have said that since they took out a lot of stuff in my lower abdomen my bladder has probably fallen over backwards since all the bits that were around it have gone. Anyway I’ve been doing this for over 20 years and now I’m used to it. But before bed I do my pee routine and the brush my teeth and then have a second pee.
The ___ world of M.S. is full of unpredictability. Your routine appears to be at least working for you consistently. I’m no expert, but, you can at least have your Vitamin D levels checked to try and prevent it. Mine was contracted in my fifties – late onset. Head for the hills!!
Yes a least mine a constant over 22 years. I wish you all the best fornyour situation.
Thank you Mary. I do keep a very close eye on my vitamin D levels and take a supplement. 🙂 I hope you are doing ok with your MS. xxx
Not too much information at all! I saw my MS nurse today, and am now being referred to a specialist pee person. I’m telling myself not to be embarrassed! But I think I will be on the day. :/ And I always have the second pee after brushing my teeth too now! xxx
I have numbness in the toes. My peeing issues aren’t as bad, but I probably have to go more than a dozen times a day. Often I rush to the bathroom because I think I am going to wet myself but nothing happens for several minutes when I get there. My leg twitches like a fish out of water most nights after I get into bed, which is infuriating because it’s hard to fall asleep.
I have to pee more than most people too! I had the leg twitches a little for a few weeks, but they didn’t stay long. MS symptoms are so strange and random! xxx
Sorry you are experiencing these strange things I hope you find a way to deal with them. I am sure there are other people out there who would be glad to share in their experiences so I have given this a Tweet, I wish you and Dizzy all the very best and a big hello from Dotty.
Thank you so much for the tweet. 🙂 How are you doing? Did you and Dotty have a nice Easter? 🙂 xxx
The words are indeed hard to come by. This is why I’ve made dinner with meat pickles (sausage).
I think i have lots of friends on days when my thigh vibrates… but no texts once I look.
My favorite is the blocks of burning ice that surround my feet some days.
I think meat pickles makes perfect sense! My brain doesn’t seem to even want to come up with these great replacements, it just comes out with a completely random word! x I hope you’re doing ok, and had a lovely Easter. xx
Definitely word finding problems are familiar to me!
It seems to affect a lot of us! x I hope you’re doing ok Jen and had a lovely Easter 🙂 xxx
I’m sorry you have to live with these stranger symptoms of MS. The pee thing I live with too but from nerve damage and it’s mightily frustrating, especially when you need to go but can’t. An hour later and you’ve fallen asleep on the toilet 😆
xx
Incredibly frustrating itching that itch that is just never satisfied! Yep! That’s me!
Or, the pee that absolutely refuses to leave no matter how long I remain sitting on the toilet but very quickly emerges once my pants are pulled back up. And, then I can’t turn the faucet off, creating more laundry and floors to be washed for my husband to do. And, of course we can’t forget all the spilled milk, coffee…you name it, I’ve spilled it or dropped it when numb hands and lack of coordination joins the party. Never a dull moment at meal time or anytime for that matter, when I’m around lol . And yet, I still manage to smile and laugh through all my little MS conundrums & quirky “issues”….or at least I try. 🤷🏼♀️
It’s true. There’s never a dull moment with MS! 🙂 And I definitely relate to the needing to pee, and then nothing… x Being able to laugh and smile through them is so important! I try too, although I don’t always manage it. x I hope you’re doing ok, and had a lovely Easter. 🙂 xxx
Hehe, I sometimes feel I could fall asleep on the toilet! I am now being referred to a specialist pee person! Which is a bit scary. I think I’m just going to feel really embarrassed on the day! :/ xx
Aww it’ll be okay, but I get the embarrassment. I had to go through a bunch of “Bladder function tests” in 2019 and you should have seen some of the stuff I had to do… 😂😂😂😂 I’ll tell you if you want to know but the tests don’t really look at nerve damage, which is what I have and maybe you experience with MS pee issues, so you might not have tests like those, if they do any at all. At least each time we manage to pee fully, we can do a victory dance of success, which is a big achievement in any given day! xx
The nurse has said it will be a pre and post pee scan, and that should be it. But my peeing hasn’t really been quite right since I was about 15 (which I think is when I first has MS symptoms as I had massive fatigue too), but I was to embarrassed to tell anyone about the peeing, but feel I should tell this man? So don’t know if that will mean any other tests? :/ What tests did you have to do? What did the results come back as? Thank you for all of your support. I really appreciate it. xxx
Oh that great and that’s it had that glad it is over with him I hope it never happens again left it for about a week used all the itch medication I could find finally the doctor helped me out on it I am so glad it is all gone now on to the next weird symptom of MS thanks for starting this block we need a bunch of them around get all this and that stuff out of our system
I don’t have MS, but I empathize with you and Dizzy all the same. I wish your drug regimen would have helped you more Heather.
Unfortunately the drugs don’t help any of the pre-existing symptoms, but they should help prevent any new ones for a while. Which would still be great! 🙂 xxx
That will be great Heather and the drug companies are always working to find more options, so that helps to give you a positive outlook as well.
I wholly understand! Vertigo is one of mine lately! Bizarre!
I hope you’re doing ok Mal. I hate the vertigo so much! Are you getting it all the time, or is it coming and going? I really hope it goes away soon. Make sure to look after yourself until it does. xxx