Hi everyone, hope you are as well as can be expected…
I have been having 'MS flare ups; since going on to Betaferon 2 years ago after having one relapse. A very experienced MS nurse told me it is to be expected as I am now Secondary Progressive; or somewhere in between. My Neuro recently advised me to self Catherise twice a day as he said some of these flare ups are probably caused by urine infections. Found it tricky at first but now manage ok with it.
Since the beginning of December I have been having problems with constipation and bowel incontinence; also my right side was weak particularly my hand and I dropped several things over Christmas.
I have felt pretty good for the last 2 days and realise that I must have had some sort of relapse. (Still working on the bowel issues and exercising right hand).
I can still walk but not very far these days and use a scooter to get me around town.
Is this what I should expect? Flare ups every few months followed by maybe a week of feeling quite good.
Advice from other Secondary Progressives would be appreciated.
Secondary Progressive is as individual as any other type of MS. I have SPMS but my experience is very different to yours. My diagnosis came straight in with SPMS but I don’t get any flare ups, just steady progression.
MS is a slippery beast, it affects us all differently.
Sorry, I’m not sure I understand what your MS nurse has said.
My understanding is that “flare-ups” (relapses) should diminish or disappear in secondary progressive, not become more frequent.
I really don’t understand why your nurse is saying “flare ups” are to be expected now.
If they are indeed caused by an infection, then they’re not genuine relapses anyway, so probably don’t cast much light on how many “real” relapses you’re having, or whether you’re still RRMS.
As Annie said SP affects us all differently. I don’t have flare ups as such just a steady worsening of symptoms with periods of plateau and times when I feel worse than other (usually fatigue) I try not to think about it too much – it is what it is and there’s nothing I can do about it.
Sorry to hear you are having a tough time, the more I read on this site the more I read the more I realise how varied this is. Having only been recently diagnosed it’s still all a huge learning curve.
Could I be really stupid and ask about bowel incontenience and what exactly it is. i.e does that mean you have diahorrea and leak or just the diahorrea. Sorry for sounding stupid. Also does this mean relapse or just a symptom that comes and goes.
Not stupid at all Tracey, I had this 11 years ago and called it diahorrea, it went on for a year and all my doc said was to drink lots of water, this I did and finally ‘cured’ it. My doc probably knew it was MS as I’d had a numb arm as well as the bowel/bladder problems, glad she did’t pursue it though as I went on for another 8 years oblivious to my condition. Yes it is like diahorrea but not caused by a virus or bug. So I suppose that’s why it’s caused incontinece. It’s not catching (as far as I know) but obviously means we have to keep as clean as poss especially when we’re self catheterising. All good fun LOL.
I believe (could be wrong) that these are just symptoms that happen because the signal from the brain to the bowel/bladder are not good as the nerves are damaged by a relapse or the damage has been done over the years from many relapses. I am still learning and am not sure if this was a relapse, any way it was mild, probably because I inject Betaferon.
Thanks for the info. Last week I had 3 episodes of diahorrea which were over 2 days and mild stomach cramps. Not sure now if it was a bug or a new symptom and if so not sure what it all means.
I had a MRI of head just before Xmas to see if after 4 months of Avonex if there were any new lesions and was pleased to be told no new ones. The problem is I am now thinking well ok no new lesions on brain but what about if they are somewhere else and starting to feel upset that actually there are new ones just not on head and diahorrea was becuase of new ones.
I am spms and very similar to you, i have still have relapses, mine are just more severe now, and they last for up to 6 months, when i was RRMS they only lasted about 6 to 8 weeks, its a misconception that relapses stop when you are spms,i wish that were true for me, i know some people who are SPMS and DONT have relapses anymore,but as you know its different for everyone.
I normally have a severe one in the winter months,the last 2 years i have been bedbound from january to april, the rest of the time i have smaller relapses, i cant walk more than a few steps nowdays,so i am declining gradually, but still have the relapses too.