Hi there, my name is Isobel. I’ve had MS since 2016 and am on Ocrevus. At my last appointment there were no new leions on my scans, but because I’ve been slowly worsening for over 6 months now (EDSS gone from 2.5 to 5.5) my consultant says it looks like secondary progressive. Which I was kind of expecting, but still…wasn’t a fun conversation. I guess the thing that’s really got me is I’ve always assumed I’ll do loads of rehab and be a bit better in the future, and now I’ve got to get my head around the fact that I won’t be a sprightly grandmother, or maybe even there at all to support my children. I’ve seen people with end stage MS and I’m terrified. I’m fine wandering about with my walker or scooter, and I have the most amazing husband and kids (5 and 6). But I don’t want to be incontinent, and I don’t want to lose myself to the cognitive issues. I already have memory and attention problems and survive on post-it notes but I’m still me.
I suppose I’m hoping someone has some reassurance or words of wisdom.
Your MS Team may leave you on ocrelizumab but they might try to switch you to siponimod which is the only DMT licenced in UK for SPMS. Elsewhere in the world, ocrelizumab may be prescribed for SPMS but in UK it is only licenced for PPMS and RRMS. Worth asking the question.
The trouble with this MS lark is that you spend so much time worrying about the future, that you can forget to live in the present.
Enjoy what you have and try not to fuss about stuff that might never happen.
I feel exactly the same way as you, right now. Probably best to take each day as it comes; I now just aim to be a little less disabled tomorrow than I am today.
Hi Isobel, totally understand your feelings right now but as the lads have said, try to focus on what you can do and enjoy the present and deal with things in the future as and ‘IF’ they happen.
Be sure everyone on this siter are just wonderful and are here always.
I have had to adapt life quite a bit which at first really broke my heart but now I have accepted this is the ‘new me’ and I will continue ‘trying’.
Enjoy your lovely wee family and be kind to yourself.