My LP/VER was fine and I have some more blood tests to do. According to the Macdonald criteria I have MS due to having 2 lesions, but the neurologist who I will see again in a years time said I need 7. Other than excessive tiredness and some memory issues, which might not be related, I am ok. Does the diagnosis really even matter at this stage? Thanks.
Hi - how frustrating for you. Your neuro isn’t doing his job keeping up to date with the latest guidelines if he thinks you need 7 lesions but if you’re well it probably doesn’t matter. The only reason it might is if you should get on those dmds earlier rather than later. I don’t know about that though…the experts on here will respond soon I’m sure. xx
Hi there,
I’m no expert but I think you have to show that you have had more than one episode to fulfil the McDonald criteria - which was my problem. I had about 9 lesions on first scan but had to wait for a follow-up scan showing new lesions, some of them contrasting with the dye injection.
If you just had the first scan, they might tell you that you have Clinically Isolated Syndrome, i.e. a first attack of MS. There really isn’t anything you can do until you have a second episode of symptoms - a relapse. Very, very frustrating to wait to get worse before you can be offered treatment to get better. There’s some great information on the next about clinically isolated syndrome (CIS), so might be worthwhile having a little read. Keep a detailed diary of your symptoms and make sure you have access to an MS nurse in case you think you are having a relapse.
If you’re feeling not too bad at the moment, try to put it to one side if you can. It can take a while or you may never have another episode, so please don’t put your life on hold.
Hope this helps!
Choochyx
7 lesions is b******s. Your neuro is horribly out of date.
However, it’s not just 2 lesions you need for an MS diagnosis - they have to be in the right place too. And a lot of the brain doesn’t “count”.
The important places are the spinal cord, the cerebellum and brain stem (“infratentorial”), touching the ventricles (“periventricular”) and touching the gray matter (“juxtacortical”). Someone could have dozens of lesions in other places, but still not meet the imaging criteria for MS.
As the others have said, medical history is critical too. You will not get a diagnosis of MS unless you have had at least two relapses or have had a gradual worsening of symptoms over 12 months.
If none of that fits, then it looks awfully like something else is going on, and that it’s perhaps sensible to wait to see what develops.
Karen x