you would think I would learn to wait

Well I have been on copaxone for 9 months and saw a new neuro for a second opinion. I had an mri on sunday and am waiting for results. I dont have an appointment untilk mid july and dont feel I want to wait as although I havent had a relapse I want to know if there is anything going on, if there is I would ask to go on a different dmd. Ihave my old mris on disk from my local hospital but gave them to the new neuro to look at as heis in a different area. I got a copy of sundays mri on disk but have nothing but memory to refere it to. I think there might be a new lesion and not sure if anythig enhancing at the moment. I would like to go on hoilday and would feel safer going abroad if I knew there was nothing active at the present. The consultants secreatary is off sick so I cant ask hef but I have emailed. I know im being silly looking at my mri as im no neuro but now i have it i cant stop looking and thinking is that new etc. Wish rizzo was still around, really miss her, i hope she is well, i know shes having a break but does anyone know if she is doing ok. Anyway dont know what im asking really just know I should just wait for the proper channels to give me feedback but I hate the fact that someone knows what is going on in my brain before me and that I just cant help myself but get copies and then try and see whats going on



i hear (and understand) the frustration in ur post.

but, yes be patient, you will find out.

i will text karen and let her know u are thinking of her if u want?


ps i doubt if anyone ‘knows’ whats going on in ur brain-they can only estimate.

Thank you, when u speak to karen, pls forward best wishes and hope she is doing well I dont think I would have got through the early days without her. There are lots of people on here with great advice and words of wisdom though who continue to help others, yourself included and im greatfull, sometimes we need someone to tell us , even though we know really what we should do. For me thats to wait and stop looking at my pictures as I know the ms is not going to disppear and I should expect new lesions, but secretly hope a miracle is going to happen and be told its all a mistake. Xx

Thanks zoe

Hi Zoe,

Please don’t let uncertainty over the MRI results stop you going on holiday.

The best guide to how you feel is how you feel, and NOT MRI results. I’ve had new activity visible on MRI that I was not aware of at all, in terms of symptoms. I’m quite sure I would have been “safe” to go on holiday during that period, despite my MS being up to things of which I was blissfully unaware.

MRI evidence does not correlate that closely with how badly you are affected, so I would hate to think you were putting your life on hold, because of uncertainty about whether there might be one or two new lesions. If you feel OK to go on holiday, just do it!

Of course, I’m not completely reckless - I recommend you take insurance that would cover you in the event of a relapse, but I’d recommend that to anyone with RRMS, whether or not they’d had a yet-to-be-interpreted MRI.