Havent been on here,with one thing or another for a few months.
Update on me, Ive been told by the consultant that i now hve Progressive Relapsing MS.
Carnt seen to find much infomation on web about this,so i thought i would def try on here.
My symptoms are much worse than 3 years ago.My walking has def detoriated,but i think having a tear in my left knee dousnt help,stupid me going down a esculator,had a panic attack,my mate grabbed me,before i fell,and my knee popped.
It’s quite rare - I think the rarest MS type of all.
However, I think basically, what it means is you have primary progressive, with the odd relapse superimposed on it. Sorry, that does sound rather like the worst of both worlds.
I do wonder how much the disease really conforms to these man-made labels, though, and how much we need to get worked up about what somebody decides to call it. It seems to be very much a law unto itself, and personal to the individual, whatever label is applied.
Could this be another name for SPMS with relapses?
Some of the DMDs are approved for this condition.
Does sort-of tend to reinforce Tina’s point about labels. We need labels as a shorthand to avoid the need for long descriptions - but the whole labelling thing goes pearshaped when officialdom sticks a set of (let us say three) labels on a medical condition (and uses them for it’s treatment decisions), and the medical profession finds that these labels are inadequate for their own purposes. We all know:
PPMS
RRMS
SPMS
but what about
“Agressive RRMS”
“Benign RRMS”
“Progressive Relapsing MS” - as that which started this thread.
The trouble with labels is that the “popular” press can get hold of them, and start using them in an emotional or derogatory way - just think about the pictures conjured up by the expression “Asylum Seeker”, or “Romanian Jobseeker”. Or think about the “Ethnicity Codes” used by the Police (IC1 to IC10) instead of spelling the presumed racial origin out just in case somebody overheard.
But we all use labels - usually without realising that we are doing it.
This is the least common subtype (approximately 5%). Individuals show a steady neurologic decline with a clear superimposition of attacks. There may or may not be some form of recovery following these relapses, but the disease continues to progress without remissions.
It’s very much what Tina said it was - I’m sorry. This is the web link too.
