Was given the sad news today by neuro that I’m in the transition phase from rrms to SPMS. I had an inkling but didn’t want it to be true but to be told directly to your face is quite hard. To know you’ll never be able to walk unaided again or have proper control of your legs and that you might keep declining is such a tough one.
How did anyone else take this news? Would really help my mood atm cos I just want to curl into a ball and sob all day 
If I thought that being labelled SPMS meant I was not at risk of a major debilitating relapse at any time I would feel relieved and get on with an exercise program that maximised what I had. It would be good not to have to worry about which DMT to pursue. Exercise is ignored as one of the most potent things we can do because we are looking for the magic drug solution.
I view my life as a slippery slope and exercise as my way of trying to arrest the slide or even claw something back. The good thing is you are in control rather than trying to persuade your consultant to give you the latest remedy.
Hi @taz29, when I was first diagnosed in Feb 2007 I wasn’t given a label at that time, they said it was because I wasn’t following the usual journey, (whatever that is ) so I was monitered for about 18mths to see how I went on and after that time of actually not having what they called relapses, but clearly going downhill they gave me the label nrSPMS, it was like a smack in the face, like being told again all over, so I get it.
As far as @crd comment goes I would love nothing more than being able to exercise, as this was a BIG part of my life before MS, as far as drugs go, the only thing I take for MS is Baclofen, for stiffness and spasms. If back in the day I’d been offered DMT’s to slow the progression down, I’d have beitten their hand off.
Take care and have a good day.
Jean
Interesting, i got diagnosed with Relapse Remitting as well in 2007. Fast forward today, maybe 3 months ago and i get told i am secondary preogressive MS. It was a shock but with me being a pain in the arse i ask my consultant whats the difference between secondary peogressive and Relapse Remitting. The answer i got was? There is no difference
Oh PaulMcGaw, I disagree with your neuro, I never get a rest from this and I know some with RRMS do, as I have a lady come to my once every 5 wks for a back massage and she has RRMS and lives a perfectly normal life and I don’t, yes she has a numb hand and slight fatigue, her words not mine, but she can do so much and I can’t and I bet a lot of others can’t, so your neuro anwser P***es me off
Yes I definitely agree about keeping it all moving as much as possible I do physio probably 3 times a day hoping to see the leg miraculously lift itself better but to no avail but onwards and ‘upwards’ from here even though it’s a hard situation to navigate.
My usual neuro said Oww your too young to have SPMS relax and stay optimistic 
though I’ve declined quite badly in the last year and knew there was more too it. And yesterday a different guy says there’s no age limit on SPMSim afraid,so who’s fibbing and who’s not?! So angry as they never have the right answers and want you out that door as fast as they can 
Hi there,
Remember that MS is a very variable disease and different for all of us.
RRMS & SPMS are part of our journey. I think that they are really just labels used by the NHS but don’t accurately depict who we are other than affecting treatment pathways.
As previously said if possible exercise and generally try to live a healthy lifestyle.
I’ve been dx RRMS for 13 yes. I’m now on Ocrevus but have never had a relapse since my first when I lost control of my left leg. Tbh I think I’ve been SPMS all that time but was fortunately labelled RRMS to give me access to DMTs.
So I’m trying to say don’t be upset by the label and live your best life.
Good luck
Hi the nero who gave me that was Colin O’leary, i believe he is the top dog for MS in Scotland and britian. He informed me that while it is still relapse remitting it is just they are getting better at pin pointing the subtle differences. So in short my MS is more debilitating but that was always going to be the case. MS is a fecking pain, part of me is glad they are getting better and more advanced in treatment and diagnosis, there is always the selfish part of me with 1) this sucks why me and 2) ok why couldnt this form of treatment available to me back in 2007. I no longer take injections or twice daily pills as i have been on mavenclad and will be no more pills for a year now. Downside? Bloody shingle symotoms. But it was only a total of 4 weeks pills over 2 months, i think and when i competed the course no more shingle symptom
Hi Paul. Your neurologist must be a colleague of mine - Stewart Webb at the QEUH.
I tend to agree with him about RRMS and secondary progressive and I follow the thinking of Professor Gavin Giovanonni whose view is very much that ‘MS is MS’ —— https://msselfie.co.uk/
My general view/ way of looking at it is that MS is a condition that can develop at pretty much any age; in all cases there is ‘progression’ i.e attacks on the myelin sheath but particularly in the early days those attacks are relatively small and don’t produce any major noticeable symptoms ( sort of ‘silent ‘ progression) ; for some people it progresses steadily and relatively quickly ( the attacks are more significant/ extensive) ; for others more slowly; for some people there can be sudden periods of rapid progression followed by quieter periods but there is still ‘silent progression’; for some reason the sudden attacks ( relapses) but the progression continues. Basically we all have ‘progression’ but some of us also have periods of sudden rapid progression . The Professor talks about ‘smouldering lesions’ , progression independent of relapse activity (PIRA). A lot of what he says makes perfect sense to me .DMTs are quite good at reducing the ‘periods of rapid progression (relapses) but so far there is no slowing down underlying general steady progression
I was diagnosed with SPMS in 2007 without having known that I had had RRMS (lots of incidents just no one joined the dots). I spent about a year in a bit of a daze but you do come out the other side and realise that life is just what it is and you have to do the best with what you’ve got, keep moving and doing the things you love, I’ve found Pilates has been fantastic.
You’ve got this.
Love
Becky x
Yes I try but get into a funk it’s hard being optimistic with two little ones and now not being able to do much with them ;( the thought of I wish I had done more with them when I was mobile creeps in everyday.
Thanks for your kind words Becky,yes exercise makes me feel a lot better I must try Pilates! Hope you are doing well xx
You need to be kind to yourself and give yourself time to process the news. It’s definitely not easy and you’ll have good days and bad days but I think it gets easier over time. My two were six and four when I was diagnosed and I felt the same way you do about all the things they’d miss out on. I was talking to them about it the other day (they’re now 23 and 21 
) and they pointed out that being able to run around with your kids isn’t what makes you a good parent, they’ve only ever known me as having MS and they’re so supportive (and not above taking the piss!). Talk to people, don’t bottle it up. x