Newly Diagnosed

I suffered Optic Neuritis on 29th May and was give the standard treatment of 1000mg Prednisolone BD as an in patient for 3 days, then a tapering oral dose starting at 60mg over a course of 6 weeks. Initially there was a slight improvement - moving from dark grey to light grey, however recently that has deteriorted again and we are pretty much where we started.

I have alse noticed electric like ‘shocks’ going down the nerves in my right leg only and also tingling and loss of feeling in extremities - toes & fingers, however that does return. My main question is this as my Neurologist is reluctant do diagnose MS until I have another episode, I am still classed as CIS. I am a little suspicious of that as he has enrolled me on a clinical trial using high dise Vitamin D together with mothly Neurological assessments plus 3 monthly MRI’s to ascertain progression of the disease or lack there of.

My concern would be that the vision has not returned in 21/22 weeks so would this be more indicative to PPMS or a slow RRMS. Any feedback or comments would be very welcome. Also should I insist on coming off the trial and maybe starting on say Avonex or similar or would I be better finishing the trial, as to be fair the Neourologist and associated stff are first class.

Many thanks for any and all suggestions.

I am very sorry that your ON is taking such a long time to clear up. Sometimes things just do - I hope that things start heading in the right direction soon. What is your neuro’s view on the disappointing level of recovery so far?. I expect that he/she would just say it is early days and advise patience, but you certainly ought to make him/her aware if you have not already done that. They need to be aware of how your condition - whatever it is - is behaving, because how aggressive and active it is will affect their thoughts on treatment options if it does turn out to be MS. I am sorry that you are having such a worrying time. Alison

Hi there I too suffered with optic neuritis last june and my vision has never been the same since. My neurologist is reluctat to lable it as MS as he wants to wait and see if ihave more episodes besides legs going numb and tingly fingers and 2 wks ago I started getting an electric shock like feeling down my right side and it is now affecting my speech as when it happens I slur. Am booked for an MRI IN OCT so am hoping to get a firm diagnosis thento start on some meds to help. Hope you get sorted soon.

Hi February rising

I’m sorry to hear about the optic neuritis. Diagnosis of MS is a complete mindfield. I can understand the neuro’s reluctance as many people who’ve had optic neuritis can never go on to have MS (I think 50% off the top of my head but don’t quote me on it). So it’s good he’s trying to be pro-active in doing something and isn’t rushing to diagnose you as MS if it may never happen.

Conversely I wasn’t sure whether the numbness and electric shocks were a new thing that happened seperately or at a similar time. If it’s happened seperately (I think their needs to be a month seperating the episodes and you need to have been well as colds/flu / infections etc can cause mini flare ups of symptoms) then that’s more grounds to diagnose you as you have had two epsiodes.

You should read up on the Mcdonald criteria (there’s a new ammended version) but this will outline the guidlines the neuro’s need to follow.

Being on this trial should in noway make you feel like you have to stick with it if it’s affecting your chance of diagnosis (if this is what you want). Perahps speak to the neuro after reading the Mcdonald criteria and ask him how you fit against it.

As for the PPMS/RRMS it probably is too early to tell which direction things will take if your CIS indeed ends up as MS but again the Mcdonald criteria will outline requirements for both.

Good luck. I hope your ON gets better and fingers crossed you remain symptoms free in the future.