Hi I was diagnosed with RRMS nearly 2 years ago so far no major symptoms main issues are bladder problems and reduced sensation in my right leg. I am plodding along telling myself I will deal with a relapse when I have one. But it’s the fear of the unknown how do you deal with that? Am scared what a relapse will be like. Anyone else feel like this?
Hi Softie
Stop expecting the worst case scenario.
enjoy what you have now.
go to your nearest Bladder & Bowel Clinic, either ask GP to refer you or just phone them yourself.
really worth going, they helped me loads.
Honestly I was diagnosed in 2008 and still doing very well until an accident left me in constant pain.
the accident could happen to anyone at any time.
so i may well look like my MS is killing me but it’s a fracture that doesn’t seem to be healing.
Carole (Northern Hardcase - not really)
really if you have say 35 years relatively problem free, make the most of them,
xx
Hi Softie,
I have SPMS (7years) and my mobility/symptoms are better than my sister who is RRMS (20+ years), which sadly is down to the relapses that she’s had over the years, the last one 18 months ago being particularly bad, however, on the flip side of that, my cousin who is also RRMS (18 years aprox) and her mobility is actually very very good, yes she gets bad days, but on the whole you wouldn’t think she had MS just by looking at her mobility, she suffers painful spasms and has vision problems when things are bad, but she still, after 18 years enjoys a pretty good active & social life.
Luckily, with the help of DMD’s she has held her relapses to a minimum, my sister was not so lucky.
I’ve never had an obvious relapse, I’ve just slowly shifted towards SPMS.
Like Catwoman says, enjoy what you have now try not to dwell on what the future might hold.
I had relapsing remitting for many years. During those years many things happened but nothing major so don’t worry. Relapses happened but relapses always recovered, they were annoying and inconvenient but never a big problem.
im now spms but that’s not because the MS got worse, that’s because the drug I was on poisoned me and caused seizures and all sorts of problems. I am certain had I never taken this drug I would still have relapsing remitting MS and I’d be fine
Hiya, I was diagnosed with RRMS nearly 2 years ago. I try to live and eat right. I’ve been relapse free for around 2 and a half years. No symptoms other than I think my balance is a bit off when I’m running or on the treadmill.
.I’d say don’t dwell on what may be, just live your life best you can, but respect your condition. God willing it will be many years before it darkens your door again.
Sometimes its the thought of the unknown that’s such a worry, but really, none of us know whats around the corner.
Have fun and be happy.
Retro x
Hi, are u taking a DMD? They’re all about preventing relapses. Once you’ve settled into that with rrms ur still stuck with the unknown, can’t say I don’t worry about another big relapse but I try not to dwell on it, easier said than done but figure even if worst happens at some point don’t want to have spent all my time worrying instead of enjoying what I can do (even with some highly wonky walking). Hope this helps some From x
Exactly as Froo says, its all about controlling those relapses, yes you can recover from a relapse, many times to a good level, but it’s that unknown chance of a relapse being particularly bad, with little or no recovery, so if your not on DMD’s speak to your consultant about the possibility of starting them.
When I was first diagnosed RRMS was explained to me that with each relapse the majority of people often recover to a level that might be slightly lower than prior to the relapse, and therefor over a course of years you could probably see on a graph that your level is dropping, hence the importance of DMD’s
The graph of someone with SPMS doesn’t tend to show these peaks and troughs, its a slow, (sometime fast) decline, however with SPMS, my understanding is that theres less risk of having a sudden relapse that might leave you worse off, my sister being a prime example.
Sorry to hear this.I have never took any drugs for my MS and i have had it 28yr now.I remember a proff of neurology told me that i would do better with my my MS without any drugs in my system and i have always rememberd what he said.I try and avoid any drugs and always have.I have had some very severe relapses too but always managed to recover myself even tho it too up to a year with some.
Well, I grumble plenty about the disability I acquired over the years before starting Tysabri, and I wish my walking holiday days were not so emphatically over, but one thing’s for sure: if you had told me in 1999 (when I was dx) how well I would be getting about in September 2020, I would have been happy and relieved to hear it.
As for what lies around the corner for either of it, of course, your guess is as good as mine. Of course you worry, as do I: we all do. But an MS dx is a free (and compulsory) master-class (lucky us…) in dealing with uncertainty, and the thing to avoid is wasting more time than one can help in ruminating about what might lie ahead. That applies whether a person has MS or not, of course, but it does apply with bells on when one has a chronic progressive condition, I think.
Alison
Hi everybody
Thank you all for your valuable words. I’m not in DMDs my neurologist told me I had to have two relapses within two years to qualify. I know everybody is worried think a lot of it is not knowing anyone with MS that’s why I come on here. Didn’t mean to sound pathetic but plan to poor on with my life and deal with a relapse when it happens.
Take care everybody
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Push for DMD’s, they are your defence whilst RRMS, like you my sister was told she had to have 2 relapses within certain period, she’s so sorry now that she didn’t push harder to get on them sooner.