I have relapsing remitting ms. I had a severe relapse last May (2013) which resolved fairly well with time and just left a ‘residue’ of weakness and less mobility. However, over the past year my legs have been weakening little by little and the numbness in my feet has got so bad that I just am not sure where my left foot is! I had an appointment with my Consultant the other day and she told me that it is still R&R but with progression. I’m due to go onto Tekfedira soon and it was explained to me that if it keeps progressing even while I’m on this new treatment, then it may indicate that I’m moving on to secondary progressive. But if the progression stops with it… all is well for another while at least! Anyway, I always thought RRMS was by nature an ‘on/off’ type of problem but I didn’t realise that it could come with progression too. Does anyone else out there know anything about this and maybe give me some advice?
Yes it is an on/off thing with RRMS. So that’s what the neuro says: if it doesn’t resolve but gets wirse then it has moved to SPMS. However, if you get better again (and this can take a while…) you’re still with RRMS. Have a good day too
As far as I know a relapse if severe can leave you with some problems. For example if you have a series of relapses in which you only recover say 90% the MS will appear to be getting worse ie leaving you with more problems over time. Is this actually progression or the normal course of MS ? Hopeully your new drug will help.
I’m sorry to say, that although it’s not often spelt out, and is a little confusing, due to the name, RRMS is still a progressive disease. In other words, damage doesn’t just go away - it accumulates.
Although the traditional assumption has been that most, if not all damage occurs during relapses, there may be a completely distinct damage process, that is going on all the time, and is still only poorly understood.
I know people don’t like to hear bad news, but in my opinion, neuros shouldn’t leave them thinking people with RRMS don’t get any worse. This is a misconception.
One of my pet peeves is this idea that if you have RRMS, when you’re in remission, there’s nothing at all wrong with you. Here’s what the website we’re on has to say about the subject:
"Will I recover completely from a relapse?
People often make a very good recovery from a relapse, with complete remission. However, this is not always the case and around half of all relapses may leave some lingering problems, however slight."
So having some symptoms left after a relapse doesn’t mean the person has moved on to having progressive MS. Any neuro who says it does, simply doesn’t know what they are talking about and lands themselves in the ‘cr*p neuro’ category. That’s a pretty big category, unfortunately.
Very good post actually, because having RRMS doesn’t mean that we are fit in between “attacks” it just means that we feel rubbish but extremely rubbish when we are having a relapse.
My understand of RRMS is you will suddenly feel worse, and then gradually start feeling better, then suddenly worse, then feeling better, then worse, then better…
That is the RR cycle. When i say ‘better’ i do not mean completely symptom free. I mean you feel less crap. Over time, the feeling of getting worse can eclipse the following sense of feeling better, so that the net result is a general increase of the crappiness. This essentially marks the transition into Secondary Progressive MS.
Basically the disease does more harm to your white matter than your body can repair / adapt to. DMDs seek to lessen the frequency and severity of the episodes of feeling worse, so you are afforded an advantage in the battle towards feeling better. That is also why it is recommended to have an optimal diet, vitamin and exercise regime in place; so you can ‘buy yourself more time’ between the relapses.
i have had ms 22 years now, i was first diagnosed RRMS but my first attack that got me a diagnosis left me not able to walk far at all and left me feeling really quite ill ALL the time,
yes i did recover a bit after each relapse,but each relapse left me more disabled,
they say i am now secondary progressive WITH relapses as i still have them,
only now they last for 4 to 6 months instead of 6 weeks…i tend not to take too much notice of labels,they arent that helpful really…especially when i was told i was still RRMS then told i had moved on to secondary progressive, to be then told still RRMS…???
all i know is whatever type i have is here to stay…
Thanks guys! Its been good to read all your comments and to realise that I’ve lots of company in this struggle. (sometimes its a bit difficult to speak openly to family/friends as you all know for sure. I guess, you need to experience this bloomin’ thing to understand just how much it takes out of you (physically and mentally!!) Thanks again and let’s just keep on keeping on!! x ro