I’m sorry I can’t really help, but this all seems very strange to me. A characteristic of RRMS is that patients are often relatively well between episodes, especially in the early stages of the disease, so I don’t see why that alone is cause to doubt the diagnosis.
One thing that is unusual is to get a confirmed diagnosis of MS after just a single episode, as that is more typically diagnosed as clinically isolated syndrome, or CIS, with the diagnosis only being upgraded to MS if there is another episode.
It makes very little sense to me that your consultant does not doubt you are having a relapse - but a relapse of what, if he now doesn’t think you have MS?
If, for the sake of argument, he thinks your MS diagnosis was premature, and should really have been one of CIS, the very fact you’re having a relapse now should be the clincher that converts it to MS - not removes the diagnosis!
I’ve been relatively well for over 4.5 years since diagnosis. My neuro freely admits that I’m doing a lot better than the “typical” prognosis for someone who’s been ill this length of time (we think I probably had it for some time before, as well). However, he’s never, ever, suggested that casts doubts on the original diagnosis.
MS is a notoriously variable disease, and it’s possible to go quite some time - years even - between significant relapses. This is a known feature of the randomness. So I really can’t see why anyone should have their diagnosis removed, as a result of being “too well”. It might just mean you’re at the luckier end of the spectrum, so far. Which is fantastic, of course, but I don’t understand why it means your diagnosis is suspect.
I’d love to think 4+ pretty good years (without DMDs!) means I can’t really have it, but nobody’s given me that straw to clutch. The MRI evidence was quite unequivocal, and I had new active lesions six months later, so that was diagnosis all done and dusted, and the insurance company didn’t query anything (I felt sure they would have, if there was the slightest doubt), so I knew, then, that there could be no mistake, and however well or not-so-well I did in years to come, I’d still have MS.
Do you actually have a specialist MS neuro, or is he just a general neuro, as it seems very odd to talk about cancelling your diagnosis, just as you’re having a relapse which lends weight to it!
Is there any possibility you might have misunderstood him? Because like you, I don’t understand the offer of steroids either, if he’s saying the problem isn’t MS. If it was some other inflammatory condition, they might still work, so I don’t know if that’s his reasoning?
You should get a write-up of the consultation to your GP, copy to you, so you can see in black and white what he has said, and it might be easier to understand. Perhaps discussing it with your GP might make things clearer, as they would be able to translate any technical terms for you.
IF you are having a relapse, I would expect that to show on MRI, and simply reinforce that you have MS. Really don’t see where he’s coming from - sorry.