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More symptoms (new relapse / recurring ones?). What now?

Hi all,

I’ve explained more fully what is going on for me personally under my previous post ‘utterly fed up with lack of options and nowhere to turn’, and have been updating this as I’ve gotten new info (so I won’t repeat this here). However, today, I’ve had more light-headedness this morning (a previous symptom), and this evening, the light headedness along with my legs not feeling right / mildly numb. Also, my vision seemed slightly blurred again this evening, but unlike in Jan, it seemed to be both eyes (although was very mild and passed very quickly - it’s resolved now). This all seems very fast (see previous post), and I’ve literally just today finished a 5 day course of Steroids. I would of thought things should be on the up, not getting worse - but the Steroids don’t seem to have helped at all. I’m perplexed. What helps, and what am I supposed to do now (again see previous post for more info with what’s been going on with me & my general situation - I apologise, there’s a lot there). I think these are just recurrances of previous things I’ve had, but I’m not sure if that makes them a relapse or not (indeed I haven’t yet recovered from my last relapse, so it’s all a bit muddled). The other thing I’ve had (last week - so during my relapse, but has not recurred today to-date) was right sided facial numbness / change in sensation.

I guess I’ll see what tomorrow brings, and if things are not substantially better, then will have to go back to the GP’s (not that I’m expecting much from them - see previous posts). I think that a lot of mine seems to be tied in with tiredness and stress, but I don’t know what else I can do about these things - they’re a fact of life. Has anyone experienced such a rapid and relentless onslaught of symptoms for such a duration (coming up 2 months now - the rest on my symptoms + history are in my previous post), and then them just completely disappeared and all gone right again, with not many bad relapses in the future? Or is this a general downward trend from here (I know MS is very individualistic and quite unpredictable, but I’d imagine there are certain trends and predictable factors with it).

Thanks, Forest

Hi Forest,

Relapses can last many months - I’ve had one lasting a year - and steroids aren’t an instant fix, and for some don’t work at all. Two months could easily be all part of the same relapse. Indeed, clinically, relapses must be separated by at least 30 days to count as two different ones, so if you were still relapsing last week, you couldn’t have “another one” as soon as this week, but you could certainly still be having the same one - and probably are, by the sound of it.

Recovery from relapses isn’t always smooth and continuous. It’s not uncommon to get phases of “one step forward, two steps back”, even when the overall trend is one of recovery. You might just be particularly tired or stressed on the worse days, or have a minor infection (even a cold tends to make MS symptoms worse).

Tina

x

Hi I’m new to this but would say my current relapse I’m 16 weeks into and as Tina has said I get good and bad days . Used to worry I was flaring again on the bad days until the great people on here put me straight on how unpredictable this can be. I had 5 day steroids , they did help but weren’t instant fix. Hope you feel better soon Gray

Mine has lasted nearly 4 months affecting my walking, had to stop work altogether, just hoping that it rights it’s self. Steroids made no difference to me.

Thank you both. I think I was just tired yesterday (I was up very early to go with my dad to take my sister to the airport), and was definately stress - was making lots of phone calls to try and sort stuff out. Oddly enough today, not only have the old symptoms that reoccured yesterday disappeared, but for the first time in … long my eyes are completely fine, and I feel pretty much like my normal self (hurrah!! - not counting my chickens yet though!). This is mildly ironic I feel given I only got about 4 hours rather restless sleep last night (bother general worry re uni and stuff, but also it was so hot - but I don’t care now tbh!). Still probably gonna skeak to my GP I think if this doesn’t last the day, just because of the potential on-off impact of my course. Thank you for your help.

Forest x

Hi, just finished course of steroids two days ago for bad muscle spasms, unforunately I think I took them too late int o relapse, 10 weeks, to make a differnce. You may be reac ting to finishing steroids as at the mo I feel awful, keep nearly passing out and terrible nausea…I think it’s because was a high dose of steroidds and then you just stop taking them… This realpse has only been 11 weeks now but I wish to god it would stop, Ever since being diagnosed last year I haven’t felt so bad as now and it scares me as it really hits you sometimes

I know how you’re feeling Fudgey - one minute you’re plodding along through life like everyone else, nothing much the matter. The next, wack - it just comes out of nowhere, and there’s seemingly nothing you can do about it. It just takes over, and gives you no idea of when it wants to release it’s grip. Well I’m hopeful that you might be right, and that some of this may have been down to the Steroids themselves (given that I feel quite a bit better today) - or that perhaps they may finally be doing their job! Good luck, and I hope you feel better soon as well.

Forest x

Hi Forest, Rachaels relapse has been going on since the 20th May with no good days since, some worse than others. M.S. nurse said that for it to be a new relapse there has to be 30 days between symptoms so although you may be coming out of a relapse if your symptoms are new to the last relapse it might well be a relapse, Rachael had another relapse which the M.S. nurse says was a new one as the symptoms were different. Just reading that and it sounds a little confusing, I hope you can work out what I am trying to say. Good luck tomorrow and let us know how it goes. Linda x