Hi everyone, Ive had RRMS for nearly 20 years and had to come off DMD for a holiday due to constant infections. Latest x 2 MRI is stable but symtoms progressing and everyday now. Im now not eligible for any DMD and neuro sais its about treating symptoms now and not MS itself. This bit is all new to me its like being diagnosed all over again. Does this mean I am SPMS or does it take a while to diagnose? I think neuro was reluctant to change while on DMD due to drug criteria. But now Im not? Whats people’s experiences with this, im struggling to understand it all. Thank yoh x
Hi @Molly95
I’ve had RRMS the past 24 years now and like you, past few MRIs haven’t changed.
I feel my mobility has worsened somewhat, last few years, so maybe this probably down to multiple sclerosis progession.
I’ve just been trying counter this by stepping up my physiotherapy exercises, although I do have to limit the amount due to my extreme fatigue.
Hope you’re MS team can give you more guidance.
Best regards,
JP
2 Likes
Thank you for your advice much appreciated.
Hi Molly95, Well firstly I’m sorry to hear that you’ve had to off DMD. I was diagnosed with SPMS in 2007, went straight in at this, but my neuro did think I’d had MS for about 17yrs before all this, with the symptoms I displayed. I’ve had a few MRI’s since and always been told " NO CHANGE " in lesions, so I ask the question, if my symptoms are getting worse and my mobility, why are there no changes, anyway the bottom line is, the MS progresses off the old lesions and there’s nothing they can do, rubbish isn’t it. I had a friend who was on DMD’s and when they took her off them she didn’t do well, so neuro put her straight back on and she’s doing better, the only reason I mention this , is not to scare you, but to make ou mindful that if relapses do occur you can hopefully be but back on them. Take care and try to keep our chin up.
Jean x
2 Likes
Thant you for this reminder of the risks. I’m still RR after all these years, but when things do finally take their natural course I will take a lot of persuading that the disease is now on a purely progressive course. If there’s a ghost of a chance of relapses, I want protecting from them. I hope your friend is doing OK.
1 Like
Well alison100 you do right, you keep an eye on things, after all, it’s your life and you what it to be the best it can possible be. It’s ok saying “we’re taking you off DMD’s” but if it makes things worse, then NO. I wasn’t given the chance, ok I’ll live with that, but for other’s I want you to have the best chance you can.
Jean x
1 Like
I remember in one of my reports a year or so ago, it mentioned spinal cord atrophy; I know that can occur naturally with ageing, but I suppose the multiple sclerosis probably does augment the deterioration.
Then it’s best to keep on the DMD, as it’s a protection from further myelin erosion imo.
1 Like
Thanks for posting this as my recent MRI’s have shown no real change but I feel, that as I have got older (in mid 50’s now) diagnosed over 20 years RRMS that I’m getting gradually worse
Sounds like a case of Smouldering MS.
Case study: MRI-negative relapses - by Gavin Giovannoni (substack.com)
3 Likes
Hi Redman, I went straight in at SPMS 18yrs ago, apprently I’d lived with it since 1990 when I had vision problems. Anyway my has stradly got worse over the years, no change on MRI’s, my nurse told me that MS progresses off old lesions, but the older you get, the worse MS gets, so amybe that’s what’s happening to you.
Jean
2 Likes
Thanks Jean
Thanks