I’m still awaiting more of my results but it’s looking very much like secondary progressive. One of the things about dealing with MS is uncertainty. I’m trying to plan with ‘hope for the best, prepare for the worst’ in mind. The biggest thing is the function, or not, of my legs. I use a stick for balance else for most of the time I look drunk as I’m very ataxic.
Here’s what I’d like to know from others and suspect it’s one of those ‘how long is a piece of string’ questions. With SPMS I know I’m not going to get better. I also don’t know how much mobility function I will lose. What I don’t know is the SPEED at which things might deteriorate, and do things tend to ‘bottom out’ (or progression slow). I’m trying to plan, e.g. If worst-case scenario is a wheelchair then how long do I have to get out of my 3 storey townhouse and into a bungalow?
I know there won’t be a definitive answer but there must be some sort of standard deviation.
Any clues anyone? What’s your experience been.
With thanks - Gregor Findlay
hi gregor
have you been diagnosed yet?
i’m asking because if not, you will be diagnosed either RRMS (relapsing remitting) or Primary Progressive.
Secondary Progressive occurs once RRMS progresses.
we really can’t answer your other questions because we only have our own experiences to go from.
once you have your diagnosis you will have access to an ms nurse who is the person to go to with your concerns.
try not to stress about it because (yet again) i must emphasis that stress just makes symptoms worse.
carole x
Hello Gregor
Yes, it’s a length of string answer I’m afraid.
I’ve had MS for 22 years now, I was RR for at least 18-19 of those, but a couple of years ago my neurologist reluctantly decided that I was now ‘in a more progressive phase’.
Subsequently I’ve had several relapses and am now deemed to be ‘Progressive Relapsing’.
What can sometimes be more useful is the term ‘Advanced MS’. Which I definitely have, and have had for quite some time.
Everyone’s MS journey is different. I moved from a 3 storey townhouse to a bungalow 12 years ago. I started using a wheelchair occasionally 8 years ago. It was about 7 years ago that I became an almost full time wheelchair user (with a very small amount of walking); this followed a major relapse.
You can’t predict your disease course. What will happen to you will be as unpredictable as for all the rest of us.
So you could decide to ‘future proof’ your life by moving sooner rather than later. Or just take a chance on staying put (now might be a bad move financially perhaps?)
There really is no ‘typical pattern’. Some people are diagnosed and within a few short years are very disabled. Others do tend to plateau and stay pretty much as they are for a long time.
What I would suggest is that you see a neuro-physiotherapist if possible and try to get/stay as fit as you possibly can. In particular concentrate of your ‘core’ as whatever happens, the stronger and fitter you are the better the prognosis.
Best of luck.
Sue