Last reply 6 years ago
ON/OFF symptoms…hmmm….

In and out of a relapse I tend to have bad days where symptoms just seem worse then usual (tends to be caused by stress, heat, or just exhaustion). But what I find interesting/annoying is that one day I can be walking fine, the next barely being able to stand, and either the next day or a few days later back to walking okay again.
I think its the main cause that some people at my work think I’m faking (although they haven’t directly said it)…my on/off symptoms.

Was wondering if anyone else experiences this? Bad days in or out of a relapse where a symptom will just pop up and then go away?

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6 years ago

Absolutely with you on this, I have stuff come and go all the time.
Just last night, in the night, I woke up because my foot was spiking, like a stabbing pain and I felt very fatigued earlier today like weighed down more than usual.
I’ve also had electrical sensations come and go, and heat sensations around my neck and face and muscle twitches and even a complete numbness of my leg that came and went at the end of last year before my ms was officially diagnosed.

I realize that things may happen to the body which will have nothing to do with the ms but you soon start to distinguish the difference even though we may get it wrong from time to time.

6 years ago

I’m with you here too, I have good and bad days and good and bad hours. I was diagnosed last June and had a relapse just after (maybe due to stress caused by the diagnosis?? ….who knows!)
So far I’m not badly affected with my main and most constant problem being numbness and tingling in my hands. I do find that the level of numbness changes and although it never completely goes away sometimes it is so bad that I find it hard to tie laces, fasten buttons, hold a pen etc. These episodes may only last minutes or hours….so I don’t class them as a relapse, but they are very frustrating.
I think one of the hardest things I have had to deal with is my family,friends and colleagues not truly understanding the condition. If I can’t do something it’s because I can’t…I’m not being lazy or making excuses :-/

6 years ago

I experience the same on/off symptoms, and it’s very frustrating.

6 years ago

Heat intollerance is a well documented factor as a temporary cause of MS symprtoms ( Much like with an infection, getting too warm can have similar effects to a relapse, including fatigue, tingling, numbeness, eyesight problems, pretty much whatever MS can do to you. The good news is though that once you cool down, everything should quickly go back to normal 🙂

6 years ago

It is annoying and unpredictable…one day you’re feeling bad the next day you might feel better…
It’s crazy for us to understand and I can imagine how difficult is to other people understand.
I’m not working at the moment but I remember that when I was working and I didn’t know I had MS yet and my right leg was super weak…I remember sharing these things with people, telling them how I was feeling…Believing or not them always seemed nice to me…

6 years ago

just correcting the end:
*believing or not they always seemed nice to me

6 years ago

I can so relate to this and I too feel like people think im ‘faking’ it is a steep learning curve for me getting these good days and bad days. I stupidly thought you had a relapse and then was fine for months until next relapse. Duh

6 years ago

My symptoms can come and go in a matter of minutes or days, I never know how long symptoms will last, or if they will linger for months or years. When I had slurred speech I would talk fine then all of a sudden out of no where I would sound like I was drunk, but it would clear up in a few minutes like nothing ever happened then right back again for a few more words. It has cleared up now but it was very frustrating.

6 years ago

I often thought I was making this up in my head!
Docs tell you relapses can last months or whatever, but I tend to wake up with a new ability/ disability every day.
One day I may have blurred vision, for two days I’ll be fine, then I have vertigo, etc.
I never know how I’ll be! Oh, the excitement of this life 😀

6 years ago

i so get this thread…. was out last night on a date… legs literally gave way and i collapsed on the stairs [going down] yep i know everybody thought i was trolleyed… but me and my new chap both knew…. one minute good… the next…. MS calling!! xx

6 years ago

My condition can change in just few minutes. Mostly due to any exercise. I got past most problem just by starting to use a stick. Many people think that you are not faking it, when you have that small equipment with you. I get really annoyed at times with it, but it is a better choice than to have people think that you are drunk.
I tried to walk for few miles last year without a stick and somebody called the cops on me, because there was somebody stumbling around the streets. The funniest thing was that I didn’t even realise that somebody would find it scary before I had a cop asking me if I was alright.
So the stick is a good way to let others know that you’re not just faking the condition, without requiring them to actually talk to you.

6 years ago

@bubblesgalore – I know how that goes. A lot of my symptoms are on/off. I scared the HELL out of my partner a while back. Was walking down some stone stairs and my legs gave out and I fell HARD down them. He came racing down after me and was worried I broke my knee because I hit so hard.

6 years ago

Total concurrence here. My symptoms switch on and off all the time. Even a remission isn’t a time of no symptoms, just fewer problems for a while. It gets that I sometimes forget that I have MS and that when I get a new symptom, I think, ‘What the hell is wrong with me now?’. Then, as if a light switches on, it comes to me…Oh yeah, I’ve got MS. Maybe it’s the damage that it does to the brain and your thought processes, but I can be totally stupid at times, others, verging on brilliant (at least I think so, haha). I sometimes feel so tired and am wondering why. Doh! Oh yeah, I’ve got MS. See the pattern here? Well I don’t, for a lot of the time, I’m thinking through a haze.

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