Hi Forest,
Feeling rough between relapses is definitely NOT proof positive that you are no longer RRMS.
Some people recover completely - especially from early relapses.
But most relapses do leave some damage, so even recovery does not always mean: “As good as before”.
I felt generally below par for some time (years!) before I realised I even had MS. With hindsight, I’m sure I’d had several relapses, which I’d either ignored altogether, or managed to find some (to me) completely innocent explanation: “I must have caught a bug”, or: “I must have hurt myself somehow, doing XYX.”
BUT, the point is, I didn’t feel well, even outside of those episodes, though it would have been hard to explain exactly why. Fatigue was definitely a factor (actually misdiagnosed as depression - which I accepted). I had a lot of random aches and pains for my age, for which I used to get through a lot of painkillers, but no single thing, by itself, that led me to suspect I might be ill.
It’s often overlooked that even RRMS is a progressive disease - as contradictory as that may sound.
There’s growing evidence damage doesn’t occur exclusively during relapses, which used to be the common assumption.
I haven’t relapsed for ages, but can’t remember feeling well for ages, either. I’ve actually forgotten what it was like to be pain-free, or not to feel worn-out all the time.
Last visit, my neuro made the rather cryptic comment: “If it was going to turn SPMS, it would have done so by now”. Implying not only that he doesn’t think it has, but doesn’t think it’s going to. I should have quizzed him more, but didn’t.
But “feeling generally shitty” is not, by itself indicative of having moved to SPMS.
I’m sure you could ask to see your neuro consultant, if you felt it would benefit you, or you have questions the epilepsy guy can’t answer. Having another condition shouldn’t mean you have to choose which specialist you’re going to deal with. If you don’t mind, then fine, but if you want to see an MS specialist, you have the same rights to care as everyone else.
Don’t get your hopes up, though: for some of my consultations I’ve been in and out so quickly (less than two minutes) that it certainly wasn’t worth the bus fare, or my time to get there. The receptionist even thought something bad must have happened, because I was out so quickly! I just said: “No, neither of us had anything we needed to raise, so that was it!” In those circumstances, I’d be perfectly happy sticking with your arrangement, because it’s not worth going to hospital twice as many times for a lot of two-minute visits.
Tina