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