Well hon I suppose there’s good news and bad news. The good news is that yes, it can stay the same for years (we have one user on here who was dx over 40 years ago and is living independently and doing ok)… it can ‘plateau’… that’s when PPMS just stops progressing altogether.
It can also be very slow progressing so things won’t change and get worse in any noticable way… lots of PPMS’ers only notice progression if they look back a year or two. Very sudden progression is quite rare.
The bad news (or perhaps I should say ‘challenging’ news) is that there is no way of knowing. But it is important to remember a couple of things… firstly that even with PPMS symptoms can come and go, so even if you have a symptom now it doesn’t mean it will hang around for ever. Mobility can change day to day… but generally I think that for most of us it does decline gradually over time.
Second thing to remember is there is a lot of research going on into PPMS right now, so we are all hoping that new treatments will be coming along… although again there’s no way of knowing when… but at least the research is happening.
I think the best thing to do is to take it ‘one day at a time’. Don’t look into the future… it’s pretty pointless as there’s no way of knowing (but isn’t that the same with everyone on Earth, MS or not?)… just judge how you are today and what you CAN do and don’t dwell on what you can’t do.
All easier said than done I know. Helps a lot coming on here where everyone understands and is in the same boat. The support on here is fantastic and I don’t know how I’d manage without it.
Come on here and ask us anything… nothing is taboo! Between us we have a wealth of knowledge… and coming on here will remind you that you are not alone.
When you want to post again, go on the main PPMS page (where you can see all the PPMS posts listed) and click on ‘new thread’. That way you won’t be posting on the end of another post, and can give your post a title, and will get more people reading.
You are very newly dx and it does take ages to get your head around it… but I can promise you that it does get easier. Hang around with us and you’ll soon know more than the neuro’s!
Any ideas I have had primary progressive MS for over 2 years and I am interested in trying FAMPYRA,but doctors in Cardiff dont seem interested in running the trials as in other areas,and MS nurses dont seem to know any doctors running trials,I have tried several areas but now luck,I know you have to pay privately,and travel is no object.Can anyone help.Irina