SPMS and steroids...nothing positive, but maybe more optimism is needed...?
I have SPMS (never really had RR)but had 3 days of IV steroids because my consultant thought it was worth a shot. Had no positive effect (couldnt sleep very well; as difficult as ever getting out of bed and transferring to my wheelchair). So thought 'oh well...', but then one afternoon and evening my limbs got really bad like i had never been before...couldnt put food in my mouth..tried to but only succeeded in throwing it over my shoulder! Felt properly disabled.
In the morning it had returned to being at the level i was at before the steroids. I suppose that makes what happened a relapse, but ive never had one, so would anyone else agree that that's what it is? It happened 4 days after my last steroid infusion. Its now been 2.5 weeks since that last IV. Shall i quit moaning and tell myself that the effect is cumulative and i might see a positive effect in a few days/weeks. Any views/advice very welcome!
<a href='https://shift.ms/community/people/20fridays/' rel='nofollow'>@20fridays</a>, steroids can give you some "interesting" side-effects once they are taken, but these are short term. They are usually prescribed to help your body recover from a relapse and will work over the course of 2-3 months. So, to answer your question, you seem to have had a reaction to the steroids rather than a relapse. That's just my view. You should also pose the question to your MS Nurse and get their view too. Hope this helps.
It does...very much. Have been so confused, so its great to get your point of view. I will check it out with the ms nurse and definitely with my consultant as well. I suppose its about expectations and i think mine started out far too high. Neverththeless, i think there's still room for optimism.I try to have that with this whole ms business...dont want to become a full-on moaner! And I really like your straightforward constructive advice - thank you!