I was diagnosed February last year with RRMS. Since then I have been re-diagnosed with PPMS in November last year. My symptoms are “minor” to most people here and havent progressed at all. If anything, they have eased or Im just used to them. I`m not on any medication apart from the usual supplements which I take as they are quite harmless.
I suppose my question is. Im not sure what to do next. Should I be asking this question to my MS nurse or other specialist. Ive been using. I dont work because of my diagnosis plus Im a full time carer for my partner. She has Dementia.
I understand the ticking time bomb could go off at any point but I`ve had these symptoms for 15 years or more now. Should I just carry on as things stand and leave well alone.
Like Nina says, it’s hard to tell what the future brings.
My motto is while I can I will. And while I can’t I can either rest or grit my teeth; depending on circumstances.
In the past I’ve searched around for help available if my condition deteriorates. In my case the progression has been slow but continuous so it was a useful exercise.
Don’t see it as being doom-laden about the future but more as a safety net.
I don`t know why I bother posting. The answers are obvious. Must be Billy No Mates. Like you say, no one knows what the future holds for any of us. Make the best of it while I can.
I agree with Steve, it’s always worth posting, we all feel better for some reassurance and knowing there are so many wonderful people on here who actually “get” what we say is worth its weight in gold!
Hi Scudger, I was dx in 2008 after years of symptoms (put down to anxiety and hypochondria) & then told it was ppms in 2010. I’m 63.
At first I seemed to have steady progression. My mobility because poorer and I suffered terrible fatigue… always my most challenging symptom!
But honestly I don’t think I’ve had any more progression over the past few years. Difficult to think when exactly but maybe about 4 years. And some of my symptoms have improved! Part of it I’m sure to do with being used to it now, but really I can remember feeling very poorly which I rarely get now.
So even with ppms things CAN improve!!! The medical term I believe is to ‘plateau’… and it is not uncommon in ppms.
So don’t worry about what MIGHT happen in the future… simply because it MIGHT NOT happen!!!
My dizziness is nowhere near as bad now to what it was a year ago. I know that because people are`nt crossing the road to avoid me when they see me coming along. I was like a pinball bouncing off lamp posts and shop fronts staggering along. Overall, my symptoms have improved or maybe I am just used to them and my attitude has changed towards my condition as well.