Hi all I wanted to know what symptoms and things people felt when they progressed to SPMS? been having a horrible week of not knowing if it’s a relapse or progression.Ive emailed my MS dept at the national hospital but they’ve responded to something completely different (dmt switch) rather then address my relapse concerns apparently the dept is overstretched and it can take 7 days to respond.
I’ve got foot drop that has gotten really bad this week and fatigue wiping me out even after a whole night of sleep and doing nothing but make breakfast.Balance isn’t there at all and already fallen once this week that’s hurt my shoulder bad.
I’ve got two little ones under 5 and don’t want my parenthood journey to end here ;(
Hi, sorry to hear you’re having a rough time. Has the warmer weather this week affected your existing symptom(s); I know it has mine, last night was quite muggy where I am and I could hardly stand up / walk in a straight line without holding onto things. During the hottest spell last year I lost count of how many falls I had because my balance went out the window.
I was diagnosed as Active SPMS, my RRMS was written off as other stuff for years before I got a dx in 2022. I haven’t really noticed anything different in relapse/progression terms; my dx took 9 years from first contact with GP re. weird symptom(s); I had a spate of relapses over that 9 year period, I have medication for the symptom(s), use a walking stick for balance issues and ISC for bladder issue. Mostly the symptom arrived and didn’t go away, although they have improved quite a bit, but not totally resolved. I’m on Plegridy at the moment, fingers crossed I can keep on that as it seems to be doing its job.
Hoping the MS team get back to you and are able to shed some light on things for you. In the meantime, try having cool showers and ice in cold drinks to keep your core temperature down.
The other thing is that you may have a low grade infection, possibly a urinary tract infection or something picked up from your little ones which may be aggravating your MS. Could be worth checking with the GP.
Your parenting journey isn’t over yet, even if it does have to be a bit different from other parenting styles - my Mum (who does not have MS) has used a walking stick since I was about 8; she taught me and my siblings age appropriate tasks that we could do to help her out.
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I think it’s a good idea to assume that something’s a relapse (or, if you’re lucky, just a passing pseudo-relapse caused by one too many stressors like heat, infection etc) and proceed accordingly.
Many years ago I sat in the MS nurse’s consulting room in floods of tears, really under the cosh with uncontrolled MS and convinced I wouldn’t be able do more than shuffle along ever again and that the steroids would be no good this time. ‘Have they helped you before?’ he asked (knowing quite well that they had, of course). I snuffled an affirmative. So he asked me why I thought they wouldn’t help this time, and of course he was quite right and I probably recovered 75% or so of my baseline function. I tell this story just to remind you that things can get better even when you think they can’t.
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