Hi everyone Hope this doesn’t sound a daft question but how do you tell if your ms is active or not? I seem to suffer permanently from fatigue and anxiety, both come and go to varying extents daily, consequently sometimes my walking is quite difficult and I have muscle spasms and stiffness every morning. I don’t have much pain and no loss of sensation , am confused!!
Good question! I have ‘had’ MS for ‘roughly’ 13 years - I don’t bloody ‘know’!
I don’t really know either. I think mine’s always “active”, because I don’t have any such thing as complete remission any more. It feels as if it’s always there, simmering away - which I’m sure it is. On the other hand, it hasn’t boiled over into a full-blown relapse for some time, for which I’m grateful.
Maybe I’m already secondary progressive? I was only diagnosed in 2010, but looking back over all the evidence, I think I’d been ill for years before that. So it’s not impossible I might have been nearing the end of the RRMS phase, before I even got diagnosed. It does feel a bit that way. Without wishing to tempt fate, I’m not sure I have obvious relapses any more, but still subtly deteriorating regardless.
I have symptoms every day, but they are leftovers of old relapses and perhaps a bit of progression. So I would say that my MS is active when I’m relapsing or during a time when I have a lot of relapses. So, inactive during 2006-2009 when I had no real relapses (but still had long-term symptoms). Active during 2010-2011 when I had loads of relapses. Inactive now (I hope!).
I guess that progressive MS is active when symptoms are progressing and inactive when everything plateaus?
It’s so hard to say isn’t it. I had an episode that lasted about six weeks in 2010, then nothing for six months, had a relapse starting i June and I still have residual symptoms. I don’t know if its “active” or just “leftovers”! Every time I ask someone medical if I can expect the symptoms to go away, they say they don’t know, and that they could fade further.
I think my ms is simmering away in the background all the time, then from time to time it decides to go for it and knocks me for six. Whatever is causing lesions seems to be hunting for new territory and in the meantime fatigue and odd new symptom seems to arise when least expected, then full blown relapse. So I would say its with us all the time just more active at some times than others.