Hi Angela,
Post diagnosis, I don’t believe it’s usual to have “follow-up” MRIs, unless it’s to assess how well your DMDs are working.
Part of the reason is that the number of (visible) lesions doesn’t correlate that well with how disabled you are, or are likely to become, so in that sense, it’s not particularly helpful information. MRIs are useful in diagnosis, but limited after that.
As far as I’m concerned, I don’t care if I never have another one. I know I have MS, and I’m sure, over time, it will be busy creating new lesions. Do I want a running count, for me to worry about? No thanks.
I think seeing your MS nurse is probably a more practical way forward than pushing for a new MRI.
Yes, there’s a possibility you’ll still be told: “It’s your MS”. I’d be very surprised if it wasn’t! But she might have suggestions for treatment of at least some of the symptoms.
As an aside, I think a diagnosis of “benign MS” is a bit of a can of worms. Technically, such a diagnosis can only be made retrospectively, after you’ve been symptom free (or almost) for a decade or more. So unless your neuro in 2003 thought you’d already had it since '93, and that it hadn’t caused any trouble in that time, it was probably a bit premature to refer to it as “benign”.
MS, unfortunately, is MS. It doesn’t know it’s been pronounced “benign”, and it won’t stop it playing up if it wants to.
You shouldn’t feel the “benign” label means you shouldn’t have the advice and support of a nurse. Although you’re lucky to have one. I know my NHS Trust has some - I even know some of their names. But I’ve never been allocated one, or offered an appointment, nor has it ever been suggested I should be. I’m not particularly bothered, as I seem to manage without. But if you do have one, I wouldn’t hesitate to leave messages on her answering machine.
Your questionable 2003 diagnosis of “benign MS” doesn’t mean your issues are any less real than the next person.
Tina