HI - I know this topic is being discussed in another thread, but the title of the other thread was called somehing completely different, and i wasnt sure if people would notice this bit, so i thought i’d start a new one thread , as i’m really curious and would appreciate others knowledge & input about this.
So - as far as i understand it, multiple sclerosis is when there is compelling evidence of multiple attacks, whilst clinically isolated incident is when there is only sufficient evidence to be sure of one isolated attack.
So what is Radiologically Isolated Syndrome, and how does it differ from Clinically Isolated Incident.?
If you google RIS, you find that it apperantly refers to lesions on an MRI that are ‘highly suspicious of MS’, but were found unexpectedly and incidentally (for example, if a patient is having MRI for another reason), and the patient is not experiencing symptoms of MS. Different studies show slightly different results, but there is (apperently) about between 25 and 50% chance that a patient with RIS will ‘convert’ to MS within 5 years, and possibly this conversion rate increases after 5 years. It was once thought that RIS represented ‘asymptomatic’ MS, but some authors say that they now believe it represents ‘presymptomatic MS’.
BUT - here’s what’s causing me confusion - the lesions on my mri were not found ‘incidentally’ at all … they were found during investigations for MS. Also, I wouldnt say that I’m entirely asymptomatic… or even presymptomatic… I have episodes of fatigue, chest pain (MS hug?) , spacticity (take baclofen) and constant pins& needles in my leg.
As i said in the other thread, I wasn’t assessed at the time of my original first ‘event’, sothe neuro obviously can not objectively confirm it happened, and my physical exam only showed minimal problems. I was wondering if this was what had led to being diagnosed RIS not CIS - that there is evidence on mri that ‘something’ happened, but not enough evidence elsewhere of there being any one specific ‘incident’ to tie it to. But this is all supposition on my part - really i am not at all sure!
The last letter I had from my neuro said that “so far there is not enough evidence for diagnosis of RRMS, so I think for now we are dealing with a radiologically isolated syndrome.” and “I am suggesting further scans to see if any more lesions are coming through, and a lumbar puncture might also be useful at this point”.
So I know investigations are ongoing (my neuro is actually very nice), and I mostly feel not too stressed about being in limbo - if further lesions show, I may get MS diagnosis, which in some ways would give clarity, but if not, then I am trying to see it as a good thing, because it means I’m not progressing.
But - I’d still be interested to hear from anyone else who was diagnosed wirh RIS not CIS - because my diagnoses was definitely not made ‘incidentally’, as is meant to be the case. Also, the originator of the other post had also discussed RIS with their neuro - (I’m not totally sure of their circumstances, but think they might also have been having investigations for ms, so, if i’m right, in their case, findings on mri were maybe not ‘incidental’ either. So I’m clearly not the only one in this position.
Can anyone shine a light on this / share experiences?
Many thanks x