Forum

80% chance of developing MS

Hello everyone,

I’ve had optic neuritis in my left eye for about 5 weeks - it is slowly getting better so I’m not too worried about it anymore. I feel very fortunate that within 3 weeks of attending Moorfields A&E, I have had two neuro-opthamologist appointments and an MRI scan. My last appt was last Friday when I was told that because the MRI showed inflammation outside the optic nerve (as well as within it), I have an 80% chance of developing MS. The consultant was very reassuring that it would most likely be MS in its most ‘benign’ fom and that my longterm prognosis was good.

Obviously it’s all been a bit of a shock,but I’m feeling quite positive. I have inevitably been doing lots of internet ‘research’ and have come across a few instances of people in my situation being offered DMDs. Just wondering what anyone’s opinion/experience of this might be. Should I be requesting possible treatment?

I was offered steroid treatment for the ON which I declined, but have since read an article suggesting iv steroids for ON may in fact improve prognosis for MS relapses. Any thoughts?

I’m not a big user of forums but have already found this one very reassuring. It’s always good to know you’re not alone!

Thanks and best wishes to everyone,

Rebecca

Hiya, I was actually diagnosed in May after being told two years ago I had an 85% chance of ms. It took two years between two MRI’s till I knew for sure, then was offered drugs. I was offered a lumber puncture shortly after 1st episode but refused, stupidly I was in denial. After my experience I think when they say 8o% chance they are pretty sure! they just need more proof before they can offer drugs, so… You have two choices… Forget about it and hope its a one off, bury your head in the sand etc (like I did for two years and quite a nice way to be actually!) or get pushy for a proper diagnosis and get started on some proper drugs. Best of luck xx

P.s Did they tell you to take high level vit d? They did to me when I was first told I had high chance of ms and I have had no more trouble for 2 yrs! Coincidence maybe! Who knows

Hello,

Thanks so much for your reply Vicky. Being told 80% chance does kind of feel like the doctors(and me) are just buying a bit of time!

Forgot to mention in my last post that I’ve also had various other symptoms - numb face & hands, fatigue and for the last couple of days a horrible high pitched ringing and low pitched buzzing in my right ear. Also had a pain behind my right eye since yesteday so now scared I’ll get ON in both eyes. So while I’m trying to stay positive I’m also realistically accepting that I’ve most likely got MS. I’m lucky enough to have two very young children so I’m thinking the pushy option - and getting on some proper drugs asap if possible - might be my best option!

They did tell me about the Vit D which I’ve started taking and giving to my children!

Thanks againto everyone,

Rebecca

I’d be pushy about exploring options to slow the damage. 80% is a high likelihood. Association of British Neurologists (ABN) guidelines say DMD may be recomended when MRI scans show a high likelihood that they will go on to develop MS (this website, Beta interferon and glatiramer acetate). A few days ago it was reported on these forums that leading neurologists in the UK were advocating treating early in an article in a Times supplement.