Hi all its been a while since I posted, last year I was diagnosed with rr, but I’m wondering if I could maybe have a diff kind? From what I understand rr means all symptoms problems during relapse then relatively normal in between? I don’t ever have a normal day yes I have good and bad days but the good are never great just a bit better than the bad! I have symptoms everyday and I have never returned to normal! Is this how it can be with rr? Any help would be great! Thank you
hi gemma
i’m rrms but like you my good days are just less bad than the bad ones.
i seem to have more bad than good.
i just swear at it and call it names “ms you are a f*****ing arse hole”.
some days i’m very creative with my language.
it amuses me on my pain filled days.
carole x
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Hiya, I just never seem to be having a really good day I’m a single mum with 2 little ones so I struggle like mad and everyday is spent hoping to get to bed time x
I think there are always residual problems.
Well personally I’ve not been able to properly feel my feet since my first relapse 19 years ago. Remission doesn’t mean completely back to normal. If you’re lucky, a relapse will give you 100% recovery, but it’s just as likely that you’ll have partial remission.
I think it’s extremely difficult for a neurologist to diagnose secondary progressive MS in the early years. And it’s something they’re not keen on doing unless they are completely satisfied that your MS is no longer relapsing. The reason is that DMDs are in general only available for RRMS so is the neurologist thinks you are still relapsing, even if they think you are progressive relapsing, they want you to be eligible for DMDs.
Add to this the fact that for the last 7 or 8 years I keep thinking I have now become secondary progressive, only to then have a relapse from which there is at least partial remission. My neurologist has suggested that progressive relapsing might be more appropriate a diagnosis. The trouble is that strictly speaking, the diagnosis doesn’t really exist.
I reckon we need to separate progression of disability from a progressive diagnosis.
Sue
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My sympathies: I am RRMS too and have hardly ever made a full recovery from relapses either, right from the start. One or two things have resolved completely but most have left some permanent damage behind. Some people’s RRMS seems to be heavy on the relapsing bit and a bit light on the remitting, alas, or that has been my experience anyway.
Alison
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