im a tad confused. I was pretty sure I had transitioned into SPMS from RR…last relapse Jan 2013. But have gradually got worse. I have been on rebif and tecfidera…recently I came off at the end of February and Rebif just didn’t work out due to marking my skin too much. Anyway I came off the Tec as I felt I had progressed further since being on it, particularly with my mobility. All has been the same since coming off it.
Until this morning. I woke with the strangest sensations in my lumber area. As the morning went on these have spread down my legs into my feet and I have burning sensations in areas of my arms. My walking is somewhat more dodgy than usual. And legs/co ordination is difficult and legs a bit stiffer. I usually have Pilates tonight but thought best not to go because of this and the fact the weird feeling is affecting how I feel the floor etc. Hence why the walking is dodgy. This to me feels like a relapse and sensations are usually a part of my relapses in the past. However I am confused as if I’m SPMS, I shouldn’t be having relapses should I? Or is this still possible in SPMS? I am thinking I need to see the GP tomorrow and I have contacted my m,s nurse too but I’d like to nip it in the bud pretty quick if it is a relapse.
The definitions of SPMS and RRMS aren’t so straightforward. If you have lots of accumulated disability but are still having relapses, some people will put you in one category, some in the other. My neuro says the labels are ‘not helpful’. I’m on a dmd because I still have relapses, in spite of having had MS for more than 20 years and having plenty of accumulated disability.
If you are having relapses (and it really sounds like you are), you should give serious thought to going onto a dmd again - there are lots more to try. I’m happy on Gilenya, though I know some people hate it.
I was told i had moved on to SPMS from RRMS a few year ago and i still have relapses,you can still have relapses with SPMS.i still have relapses mine have just got more severe over the years in that i used to recover quite well from them but not as much now.
I’m SPMS, Mrs j is right, I still have relapses but the recovery is now very slight, I always have a slow decline in disability. I am (& have been for a while) waiting for neuro to tell me to stop my DMDs, some are happy for you to continue on them apparently, mine being 1. I seem to get relapses a lot more often than I did with RRMS & they are worse, so I guess the answers yes, you still get relapses. Tracey x
Thank you everyone. I have started on steroids this afternoon following my app with the GP, although the duty neuro then rang the GP to suggest I hold off and attend the relapse clinic Friday. Luckily I have the steroids so I think I am going to carry on with them as I had started by the time the GP rang me. And I don’t want to wait until Friday. And apparently they were going to ring me today regarding an appointment on Friday but so far nothing. I have a son to get to school etc.
I do wonder if coming off tec has brought on the relapse too. Anyway that is done now and I can’t be worrying about what if’s etc. There is a reason I cannot go back on DMDs …I am going for HSCT on September 25th so I would have to come off the DMD anyway. I am so eager to get there now and this has made me more determined.
Thanks again everyone and and I hope these steroids kick in soon.
I see no other promising alternatives so I’m biting the bullet and going for it. My consultant is actually quite supportive in his usual subtle manner but agreed there are no other treatments that are as promising at this time.