Saw my nuro on thursday, he confirmed what i already knew, after my second mri i have ms, feeling very positive at the moment and very deterimined! Just a couple of things i am confused by? Apparently i have rrms but no medication he can give me at the moment, just an appointment for an mri in dec! He gave me details for his ms nurse, i rang her and she made me feel like i was wasting her time! Do i just get on with it until i have a relapse? So confused Gill xxx
Sorry you have joined our club, but welcome all the same.
I’m no expert, but I think to qualify for DMDs you have to have had 2 significant relapses in 2 years. Significant seems to signify something that affects day to day life such as mobility, rather than sensory.
It does seem unfair that we basically have to wait to be severly incapcitated even if it might be temporarily, before we can qualify for something which might help.
Glad you’re coping ok at the moment, but be ready for it to hit you at the oddest of moments and know it is ok to have a bit of a melt down and feel sorry for yourself.
This is a great place to find answers, support or let off steam and some times we even have a bit of a giggle!
Hi, I am sorry to hear that your MS nurse made you feel bad. That`s not helpful at all…especially to a newbie who really needs support.
Perhaps you`ll get a better reaction when/if you actually have a relapse and need help.
But like Shuffler says, it`s a bit of a chuff when you have to wait to be worse before you get treatment…I thought the idea of DMDs was to avoid such relapses…crazy!
I’m sorry about the dx, and I’m a bit shocked about the reaction you had from nurse
I also have RRMS dx Oct 2012 and the only meds I’ve had were for fatigue and one course of steriods for recent relapse.
My Neuro and ms nurse have both given me the advice to live my life as normal, they are there when I need them and just have the usual reviews now all tests are done and dusted.
Glad you are positive about it, but don’t be hard on yourself if things get a bit gloomy I don’t think theres one single person on here who hasn’t felt negative about it one way or the other but that does pass.
I’ve learnt more from this forum about MS and how to actually live with it than anywhere else so ask any questions you need to theres always someone who will point you in the right direction.
Thanks for your comments, it is such a relief to know there is somewhere I can come for help and advice
Hello Gill and welcome, Sorry to hear you haven’t had much support from your ms nurse, but as the others have said not until you have a relapse they are loathe to give you anything. It’s good that you feel positive about it, but remember we are always here for you. Janet x