Looking for some opinions please. Recently recovered from a relapse that affected my walking, vision, balance and cognitive ability. Took steroids 3 weeks ago and have made a gradual improvement. Over the last 3 days I have gone downhill again. Nerve pain, fatigue, tremor in both hands, sensation loss to right side and weakness. Is this another relapse or maybe a flair up of residual symptoms as I have had them all before just not in the most recent relapse. Also wondering if it could be due to the weather being hotter? If it is another relapse I’m getting worried as it would be number 5 in 12 months. Due to start dmd’s soon, can u start whilst in a relapse? All help needed thank you :0)
Clinically speaking, no, it can’t be another relapse, because there need to be at least 30 clear days since the end of the last one, so any symptoms arising sooner than that would be treated as still part of the same one. It’s not that unusual for recovery to be a bit of a bumpy ride, with some days/weeks seeming to get worse again. And you’re right, too, that it might be the warmer weather (doesn’t get me that way, but I know it does for a lot of people).
Thanks Tina, the last relapse started well over 30 days ago, started in April and although it technically never ended, it did wane and now I have new symptoms… it is the same relapse? It’s all so confusing! Good for you not suffering in the heat, hope you are able to get out and enjoy it.
It’s not 30 days from start to start, though. It’s 30 days from the end of the last one. So if it’s only been three weeks since you thought you were better, this can’t be a new one - or not one medical science recognizes, anyway. It would be recorded in your notes as a single relapse, not two. It’s too close to be counted as a separate episode. It would be taken that the first one was still ongoing.
This might not make much practical difference, in real life - if you feel worse, you feel worse, whether it’s two relapses or still the same one. But it’s just the way they count them. The only time the count makes a difference is if you were qualifying for DMDs for the first time (but you only need two in two years, so sounds like you’d easily qualify, even if they ignored a couple), or if you were being considered for a change of DMDs. Again, it doesn’t sound as if the latest being counted as one OR two would really make any difference to the recommendation. But I’m sure they would count it as one.
To have had as many as five in one year, they’d each have to have been pretty short (the average is five or six weeks), otherwise you couldn’t have fitted in the 30 “good” days in between, that separate one relapse from another.
I say “good” in inverted commas, because it doesn’t mean feeling fine again. Only that symptoms resolved as far as they were going to, and you didn’t have any new trouble during that 30 days.
I’ve had relapses lasting months, before, so unless your neuro has said they were definitely all separate relapses, it’s possible you’ve actually been having one or two long ones, with some ups and downs within them. It’s possible to have better days, even during a relapse, but until you’ve had 30 of them in a row, it’s counted as still ongoing.
I thought any new symptom was a new relapse. For example I had weakness in my arm and had steroids. I recovered from that but less than 3 weeks later I got optic neuritis. It was counted as a new relapse even though I’d had ON last year. But because I’d recovered from the ON and hadn’t had that particular symptom in 6 months, even though I’d had another relapse just before that, it was counted as another relapse.
So I would be of the impression that it’s a relapse if it’s not connected to your most recent symptoms. I thought the 30 days was in relation to the symptom itself. So if I had ON and it went and came back 3 weeks later, it’s not another relapse. But if I had ON and it went and then 3 weeks later I got a numbness in my leg, then that’s another relapse.
Also to add, I had 4 relapses last year. A bad leg which lasted 3 months, then ON which lasted 2 months, Shortly after the ON started, my leg got bad again and then a month later, my arm. My neuro counted this as 4 relapses as it was all separate symptoms. I started on DMDs and steroids, got better and then got ON again which is being counted as another relapse. So in 12 months I had 5 relapses with one still ongoing. Or at least that was how my neuro counted them.
That was my understanding too meme, think I will just call my nurse. The new symptoms are not manageable. I think the guidelines are for interpretation, my neuro has told me I have had 4 relapses since may 2012. It’s never black and white with MS is it? Thanks for your help
Just noticed this posted anon (observant I am not) not sure why that happened, could be because I was using my phone. Sorry to confuse.