Hi I’ve had RRMS since 2011 and all my relapses have lasted over 3 weeks. My last relapse was in november when i lost feeling and control of my leg, i still have to use a crutch now and my leg isn’t much better than it was in november although there was no active lesions on my mri in febrhary. Has any body else had a relapse last this long and recovered fully? or does it mean that my leg won’t improve if there’s no current activity?
I had bladder problems for about 4 years. In the morning I had to go to the loo about every 45 minutes, even though I used to self catheterise. I had to wear pads because I often started to wee before I was on the loo. About two years ago, I started to get better. At the moment, I am going two to three hours between visits to the loo, I wear a very thin pad which I don’t actually need and I don’t have accidents. Was that a 4 year long relapse? I don’t think so - I think I had damage to the lining of the nerves controlling my bladder and now the nerves have been remylinated. Goodness knows why.
My bladders been extremely overactive since diagnosis but my MS nurse just told me that it was a factor of MS and not a relapse, not saying that yours wasn’t tho. It was my Neuro who said it was a lasting relapse with my leg but nothing was active. So just wondered if anyone had been through simular because all my other relapse symtoms went completely after 3 weeks.
it depends on your age +severity of the relapse. Try not to panic and hope!, you never know, maybe with warmer weather and spring, it may get better. :-)))
I’m 22 but it was my worst relapse so far I was hospitalised for 3 days and was only aloud home if my partner took time off work for few days. I know it may not seem bad to some people but usually with my relapses I just sleep it off for three week then I’m fine again. I hope the warm weather helps I want to be running round park with my daughter haha.
Hi Crazycatlady, All relapses are bad news whether they last a day, an hour or weeks but over time i firmly believe that the brain works our new pathways which can sometimes help. As they say, welcome to the most exclusive club in the world where no two people are the same!
If you keep the idea of running around with your daughter in the front of your mind then you will!!
Keep fighting.
Jason
Are you on disease modifying treatment? Some doctors at the cutting edge of MS research think that people like you should be given the most powerful treatments because they could make the difference between you living a normal life or ending up quite disabled. Sorry to tell you this if you already know it.
Yes I was on rebif but that didn’t slow relapses down much, now I’m on gilenya I’ve been on it since August and I felt great on it until my last relapse my Neuro is debating whether to put me forward for AHSCT or swap to lemtrada.
What do you want to do?
I think a relapse that lasts only 3 weeks is incredibly quick and to be honest, until lately you’ve been lucky that they’ve resolved so fast. For me, as for many of us, every single relapse has taken months to resolve right from the start. And I’ve also found that most relapses have either taken so long it’s felt like there’s been permanent damage, or there actually has been permanent deficits left over from every relapse.
For example, I had my first MS event 19 years ago. I’ve had numb feet ever since. I actually don’t know what it’s like to be able to absolutely ‘know’ where my feet are any more.
In other relapses, it’s taken many months and suddenly, maybe 6 months later, I’ll realise that my legs don’t feel as bad as they did. So it maybe that gradually, given some physiotherapy perhaps (?) you’ll get feeling and movement back in that leg.
I have to say, you are flipping unlucky to have MS so young. My only advice to you really is whatever happens with that leg, keep as fit as you possibly can. That’ll stand you in good stead for future remission of relapses whatever DMD you take. Unless of course you do have one of the heavy hitter therapies like HSCT or Lemtrada and basically stop relapsing.
Sue
2 Likes
I’m currently seeing a Neuro about HSCT just waiting on his decision if I get turned down then I will try lemtrada.