I agree with Dom; it’s not ALL bad news.
Although nobody has yet said so in so many words, I’m increasingly convinced I’m either SPMS or well on the way, as I’m not sure I’ve had a “proper” relapse since diagnosis three years ago, although I’m sure I had several before that, but obviously didn’t know what they were back then.
In some ways, it would be nice to think the risk of relapse was now past, and I’d no longer have to go to bed wondering if everything will still work in the morning, that did today.
If somebody said: “Well, you can forget about the relapses now - you’ll get worse than you are today, but not necessarily fast”, I might find that easier to live with than the not knowing. I don’t know how long you need to be relapse-free, to conclude that phase has probably passed. I do sense I’m still getting subtly worse - tireder, weaker etc. - but not that I’m having relapses. Not wishing to tempt fate, of course - I might have one tomorrow. But I’m just wondering how long before a neuro confirms my suspicions and says: “Look, you don’t really have them now - the reason being that it’s become secondary progressive”.
With hinsdsight, I do feel I had MS for years before being diagnosed, so there’s a chance the RRMS phase was already drawing to a close before I even saw a neuro!
I’m not going to panic about it, anyway. The MS doesn’t know what label medics choose to put on it. As far as I’m concerned, it’ll still be “my MS” I’ve had for years, even if and when my neuro decides to award it a different name. I’m not expecting an instant change on the day it becomes official - I’ve been suspecting for ages anyway.
Actually, pretty similar to how I felt about initial diagnosis. The penny dropped that I’d already been ill for years, so in some ways it was academic whether they gave it a scary name or not. My health would still be the same as the day before they told me!