Hi Was wondering if I could someone could help me with a few questions after my post MRI app with neuro? I’d already discovered that the MRI discovered 3/4 lesions in the brain. This is what else I discovered today - The neuro could only see 2 lesions and they were quite small at 3mm - The RAPD in eye with optic neuritis had improved - He formally diagnosed CIS - He said I did not qualify for any DMD treatment - He laughed at me for taking vitamin D supplements - He explained that I had an 80% chance of developing MS The immediate questions I have that I wished Id delved deeper on we’re 1) Trying to understand the numbers. I’ve read 3 sets of numbers - 20% of developing MS with CIS and no lesions - 80% of developing MS with CIS and with lesions (me) - 50% developing ms with CIS The 50% comes from a CIS fact sheet on this website I think but I don’t understand because it contradicts? Am I deffo 80% or 50% And the other question is regarding DMD. I thought I read somewhere that CIS patients did qualify for one of the three DMDs, but the doc wasn’t having any of it. He was adamant - explaining that it won’t stop anything, if I’m going to get an attack ill get it regardless, as fate and the DMD will just delay it and I wouldn’t qualify on the NHS - I’d only get it in the USA. Hope the more informed on here can help? Mx
Also - I thought there were 3 diagnostic options Not MS, Probable MS and MS, so where does CIS fit within that?
Not MS is a fourth option.
The two criteria for MS are dissemination in time (more than one attack) and dissemination in space (more than one part of the nervous system affected). Generally speaking, MS = both criteria met, Probable/Possible MS = one criterion met, CIS = both criteria partially met (i.e. one attack and one part of the nervous system).
The odds of developing MS from CIS depend on various factors. The overall odds are 50%. Someone with lesions visible on their MRI has higher odds. The same goes for someone with a positive LP. Lesion location can also be a factor as can how well someone recovers from the first attack. If everything is in someone’s favour, the odds could be 20% or maybe lower. If everything is against them, the odds could be higher than 80%. None of it really matters though - nothing is 100% and anyone could be in the 1% who defy 99% odds.
Neuros are notoriously crap at reading MRI. This neuro may be skilled at it, but I would believe a radiologist over a neuro almost every time.
Lesion size is a poor guide to severity. Location is much more important.
In my opinion, any neuro who laughs at vitamin D supplementation is either out of date or an short filtered word. Actually, if an MS specialist is out of date, he/she is also an short filtered word in my opinion.
The DMD thing is complicated.
The European Medicines Agency have approved some DMDs for people with CIS who are at “high risk” of developing MS. The evidence they based that on was that DMDs reduce conversion to MS by about 50%. Is it just a delay? I don’t know and I guess we would have to follow the people on the trial for life before we would know for sure, but I haven’t read anything to say that it is. (I don’t read everything though!) Possibly more importantly, I find it quite offensive that this neuro thinks a significant delay isn’t valuable! I would have loved some extra relapse-free years.
However, NICE have not as yet approved DMDs for CIS. As far as I know, European rules can supercede UK rules so we can take the local PCT to court for the drugs, but it can be a long drawn out legal battle and no PCT is going to go down without a fight because they’ll want to avoid a precedent that might cost them a fortune in the future.
Hth.
Karen x
Thank you as ever Karen - you really are the forums guardian angel?! Hmmm I hadn’t decided about meds, I wanted to know how I was fixed before I tormented myself with yay or nay. I think - given that my presentation has been so mild in comparison to others, I’m tempted to leave it and see what happens. It’s difficult to know what to do really - I’d rather it wasn’t the case that you had to fight at all, or worry about it and could just trust in your neuro. The irony here is that, as you may have seen me say before - I’ve somehow managed to get myself into Queens Square and am being seen by what seems to be one of the UKs top MS Neurological specialists. I’ve researched him (as you do, lol) and he is cited and thanked in lots of material used by both MS Society and other worldwide MS charities. Re the Vit D - he laughed at me and said the dury is still out on that one, so don’t know if he was laughing at me for taking it or laughing with me for being so proactive? So with that in mind I’m thinking I should just shut up and do as I’m told?!? I dunno 
Let’s give him the benefit of the doubt and say that he was laughing because his patients are getting so well informed! 
My neuro is also highly respected and much cited. Two years ago he laughed at my question about vitamin D. But he recently started telling all his patients to take it! (I’m not even remotely taking credit for this, just pointing out that opinions change :-))
I stand by the MRI and lesion thing - my supposedly MRI-savvy neuro told me, “Look, that lesion has resolved [gone] since last year” when we were looking at two of my MRIs side by side. If I hadn’t known what I was looking at, I would have missed the fact that he was comparing slightly different parts of my brain! Lo and behold, the “resolved” lesion miraculously appeared a couple of images later
Fwiw, if I were you and my first attack was mild and I’d recovered well, I wouldn’t want the stress of fighting for a drug that would reduce the odds of having a second attack that I might not have anyway. I think I’d stick to vitamin D, a healthy diet, not smoking and keeping fit. I’d fight tooth and nail for a DMD if a second attack did happen though.
Kx