I need advice please. I was diagnosed 5 years ago and manage great most of the time. Just lately though things are starting to slide. Its only little things but they are wearing me out. I have pins & needles across my neck & shoulder blades most days. I get Uthoffs (sp?) a lot and the blurry eye drives me demented. I noticed yesterday that the skin on my right boob and my right shoulder blade is numb to the touch. It was numbness on my left side that led to my initial diagnosis. I’m not on treatment right now as I came off rebiff 2 years ago as I had no quality of life with the side effects. I really dont know what to do now - i detest steroids, cant really afford to take time off work, have 2 young kids and a husband that is more afraid of upsetting the status quo around the house than worried about me.
all steroids do is make your recovery a bit quicker, I know a few years back I phoned my ms nurse to ask for her advice as I thought I was having a relapse, we were going on holiday next day so she asked me did I want steroids, I asked her if she was in my situation (going on holiday) what would she do?
she said I would not take steroids while on holiday so I turned them down,
can your neurologist not give you a different treatment to rebiff?
sounds like your husband has got his head in the sand to me, not wanting to upset the status quo it might be his coping mechanism and not believing there are any difficulites,
Thanks for replying. I left a message for my ms nurse asking exactly that - is there really a difference to the end outcome with steroids anyway? I hate meds, the neuro agreed that the rebif wasnt agreeing with me, i had given it 14 months at that point. He is hopefull of an oral med in the not too distant future. He was happy enough for me to come off rebif as he thought that my next relapse, whenever that came should be a minor one and i could reconsider at that point. I just dont know how to judge when that point is??
You/re right about hubbie, denial is easier for him and to be fair I manage better than him most days
I have never taken steroids for my relapses and i have had some real bad ones, i was told that they only do what nature does anyway, and theres no difference in the outcome, some people swear by them, but i have never taken them, i dont like the sound of the side effects.
As the other replies have shown, it’s not compulsory to have steroids - for anyone. You’re not jeopardising future health if you choose not to, as they have no effect on the future course of MS, or on disability progression.
I’ve not been diagnosed that long, but so far never had (or been offered) steroids. I’ve read up about them, and didn’t like the sound of the side-effects, so I wouldn’t actively seek them unless things got very bad.
The decider for me would be if I couldn’t walk or see, as I’d find either of those very difficult. But anything short of that: numbness, tingling, weakness - even pain - I prefer to be patient and let nature take its course.
Steroids don’t seem quite so fashionable these days, anyway. I know one of the neuros at my local hospital is quite against them, unless things are VERY bad, so that’s probably why I’ve never been offered. Suits me fine, as I survived several earlier relapses without steroids (because I didn’t know I had MS), so don’t mind continuing to do that.