I have always wanted to ask that question, also because there seems to be ‘a lack’ of it (eg clear attacks) wrt ‘my’ MS…(but I seem to think I have had attacks in the past and very past), although I am slowly but steadily going from ‘manageable’ to worse (SPMS), anyone who can shine a light?
Hi,
I describe one of my relapses as just experienced: shaking, feeling really weak, mobility going down hill, pins & needles all over the place, nerve pain running down leg, no sensation in right foot even when shoe falls off, vertigo and generally feeling unwell. Mine lasted 3 weeks then subsided.
Another time I got double vision, vertigo, major headache and weakness more than norm.
Its so hard to pinpoint them when ms symptoms seem to be so unpredictable and its hard to work out if heat has an effect, or our emotional lability. I think anything which stands out and affects us more than normal might be classed as a relapse. Sometimes we need to record events so we ourselves can tell if its different from our normal ms self.
Hope it helps
bren
x
Hi Jos,
I’m not sure others’ experiences of relapses are going to be much help to you, because they can cause really almost anything - it just depends where the lesions happen to be.
I have had (probably, with the benefit of hindsight): relapses that consisted pretty much of sore legs only (like sunburn), relapses where I threw up for no discernible reason (assumed at the time to be a tummy bug - I now think not), one where I went to bed fine, but woke up with agonising toothache both sides (now think this was TN), one where I thought I’d hurt my leg, and only one that was a fairly “classic” relapse, of the kind most people think of - weak legs, profound lower-body numbness, tingling and buzzing, impaired walking etc.
So as you can see, there’s really no such thing as typical. Even the same person doesn’t have the same experience every time.
I think one of the reasons I didn’t go to the doctor’s much sooner was that most of my relapses had little in common, so it was easy to dismiss them as a sequence of unrelated minor health problems, and never to think of them as part of a more sinister underlying pattern.
Tina
I think eveyone is going to be different I’ve had a lot relapses most of them took me off my feet some where sensory.
The worst was when I woke up one morning for work and couldn’t move or feel a thing from my neck all the way down my right side and from the waist down on both sides 7 weeks I ly on my back in hospital before I could even move my toes.
So what someone my think is a bad relapse like being unsteady or have a numb foot or something bad and all as that is I’d think nothing of it but thats me everyone will be different.
Mark x
Hello Jos,
I feel for you, as I am sure that everyone’s experience of a relapse will be different to the next persons so it will be difficult to grasp. With my own relapses (lost count) they used to be very severe, when over the space of about two weeks, my body would feel as if it was being taken over by spasticity. Along with this, I had a definite feeling that my thought process was ‘one sandwitch short of a pic nic’. The untreated spasticity lasts for a month or so. Usually, this marching spasticity started on my weak side (the left), went to the right and then was back again to have another punch at the left. If this relapse was left unchecked, then I had to go into hospital as I couldn’t move from the chin down.
Now I am on Rebif, the relapses still crop up, but far less often, and I usually request steroids. I seem to now be in secondary progressive rather than relapse/remit MS, and I don’t recover as well as I used to.
I hope that this list is of some help.
Best wishes,
Moira