Haha - well if I was being profound, I didn’t know it at the time, as I felt it was a bit of a “stating-the-obvious” reply, but I suppose some profound things are also stating the obvious, and yes, I do believe your neuro would have told you if he believed things had changed (or something would have subtly appeared in his letter to your GP after one of your consultations).
I do find it strange that I can be neither relapsing very much anymore nor (apparently) SPMS.
But it has been known for a long time that damage does not occur exclusively during relapses, so the fact I feel I’ve been getting worse despite not obviously relapsing may be how it has always been for me - and for most people.
When I look back over the years (way before I was diagnosed), I can count some distinct episodes (the relapses), but I can also see a pattern of feeling generally less well and more fatigued quite independent of that - which was why I’d NEVER connected the two! I’d always assumed the relapses were viruses or even injuries, and never associated them with increasing general debility at all, which was probably why it took a long time to dawn on me I might be ill, and longer still to find out what that illness was (referral to Rheumatology at least four or five years before diagnosis did nothing but reassure me - falsely - it couldn’t be anything serious).
So I suppose what I’m saying is I think it’s always been that way for me - getting a little bit worse over the years, even when I couldn’t point to any distinct incident (relapse).
Myself, I am not worried about getting an SPMS Dx (whether I do, or whether I don’t), because I won’t get DMDs taken away - I’m not on them anyway - and I don’t think my MS is bothered what anybody calls it - I think it will do its own sweet thing whatever, and what will be will be. I suppose, if anything, an SPMS diagnosis might reassure me I don’t have to worry about relapses anymore, and that I won’t face waking up tomorrow with anything completely not working that was absolutely fine today. But I wouldn’t treat even that as a cast iron guarantee.
The longer I go without relapses, the more I allow myself to think that perhaps I don’t have them any more. RRMS tends to be front-loaded, in that peak relapse activity tends to be in the early years - the years around diagnosis. I don’t want to tempt fate, but think it’s at least possible I was so late getting diagnosed that my peak relapse activity might actually have passed by that point - without being recognized (by me, or anyone).
I know that is (potentially) dangerous thinking. Does not having a relapse for a long time mean I can stop worrying a bit, or just that I’m overdue for THE BIG ONE? Or are they like buses? None for ages, and then three come along at once? I do hope not! But I know nothing can be changed by worrying about it. I just have to keep telling myself I’ll deal with it when/if it happens. It’s too depressing to live with a wheelchair parked in the hall just in case.