Im just interested as I think a lot of neuros have different view points. I only have had one known attack butfrom mri as there were other lesions a diagnosis. I never had had any symptoms before and my lp was lost…is this usual. Thanks zoe
Yes thats what happened to me was ill from october to end of december last year lost balance had vertigo doctors tried to cure the vertigo didnt work just left me to get on with it then in december i lost sight in left eye and was still very unwell so was sent for mri was diagnosed from that id never had symptoms before either now having another relapse been a few weeks and im 32 weeks pregnant so cant take anything as im too far in pregnancy baby may come out with problems if i take medication so waiting for it to pass x
I had an initial episode in August when I was hospitalised and diagnosed with CIS. First MRI in August showed 2 lesions and second in October showed 3 in brain. I have relapsed twice since August (leaving me with more remaining symptoms although others have gone) but the first time the neuro said the lesion causing it was already on the second MRI so it did not count. He was informed of the second relapse but I do not know what he thought about it as I have not seen him since. I am due to see him next month so it will be interesting to see if I get diagnosed with MS or if he says it is still CIS. I read somewhere that a relapse must be verified and cannot be just the word of the patient, but I notified my MS nurse who notified the neuro, but no one saw me. Surely that’s not my fault?
Hi Zoe,
You do not need clinical symptoms of a second attack - if new activity can be seen on MRI, that is enough.
But there does have to BE new disease activity - whether or not you felt it.
I suppose, technically, I was diagnosed after one attack that I knew about and MRI evidence of renewed activity - that I didn’t! Without MRI imaging, I wouldn’t have been able to tell there had been further activity, as symptoms were either too mild, or too similar to the existing, for me to have noticed. BUT, that didn’t matter, because the MRI showed clearly there had been some, so whether I noticed or not was pretty irrelevant. You don’t have to wait for new symptoms to appear, if the scan definitely shows you have new lesions.
I don’t think it depends on the neuro’s viewpoint - it depends entirely on the evidence. They have strict rules (the McDonald Criteria) about how much evidence is enough. It’s hard to argue with an MRI scan showing new lesions, even if the patient is saying: “That’s odd, I never felt a thing!” - not all lesions cause many symptoms - or any. So in a way, the MRI is more reliable than waiting for the patient to report new symptoms - it can see activity the patient hasn’t noticed.
In reality, I think I’d had a number of attacks prior to diagnosis, but they weren’t clinically verifiable, because either I’d not gone to the doctor, OR, on the few occasions I had, it was not picked up as anything neurological, so I didn’t have a neuro exam, and certainly not an MRI. Hence there was nothing on file to identify it as a probable early MS attack. So I was diagnosed via the “one attack, plus new activity on MRI” route, the same as you. I’m sure they did listen to - and believe - my reports of earlier episodes, but they would only have counted as anecdotal evidence, not clinical proof.
The problem (arguably not really a problem, as still having the chance you don’t/won’t have MS is hardly a tragedy) comes when someone doesn’t have a second attack (that they know about) OR new evidence on MRI. Then they are pretty much stuck at Clinically Isolated Syndrome (CIS), because there’s no proof the attack they had wasn’t just a one-off. “Once” isn’t multiple, hence no multiple sclerosis Dx.
Tina
x
I had a new mri 3 months after and then 6 months after that, no new lesions and improvemenr in some but he says I will relapse again, its very confusing xx
As I has one enhanced lesion on first mri and some that were not he said ms x
Hi I had a bit of conflicting diagnosis from the 4 neuros i’ve seen. The 1st) said it was a brain swelling. 2nd) neuro said ‘possible RRMS’ 3rd) neuro said CIS as anyone can get vertigo its not exclusive to MS. 4th) neuro definate MS. I had severe room spinning vertigo in Oct 2012 for 5 days. Then in Jan 2013 I had head movement vertigo that lead to double vision (vi nerve palsy) and then bladder issues, constipation. The first MRI was during the double vision. the second mri was in Sept this year and showed many more lesions inc spine. So if I don’t count the vertigo in Oct 12 then i’ve only had one long multisymptomatic relapse.
Hi again Zoe,
So in other words, he was able to distinguish between active and historic lesions, meaning they can’t all have originated at the same time?
That is proof of at least two attacks, whether or not you experienced symptoms of each one.
Tina
x
That does make sense tina , thanks. I just find it hard to reply to people in limbo as it would seem that people get such variable responses from neuros. It does nt effect me really , im on copaxone which can be used for ms or cis and theres a high possibility that I will relapses again even if 1 neuro said cis. Ms can be such a grey area, which I suppose is just the nature of the beast xxx thanks again zoe
Thanks x