Dear All, I had my first ms symptom in 1992 (isolated case of mild ON) and was officially diagnosed RRMS IN 1995. Been stable on copaxone since start of 2005 with 3 relapses since then (all well treated with steroids). My only real problems are my legs and intermittent spells of intense fatigue. I started using a cane occasionally from 2011 when needed and since then the distances I have been able to walk are slowly diminishing. Neurologist tells me I am now SP with relapses. I am really looking to hear the experiences of anybody who has had SPMS for a long time and who is still independant and mobile albeit with a level of disability. I am fully aware of everybody being different and I do take each day as it comes. I have 2 young children so plenty of stuff going on to help me not dwell on things for too long. Recently bought a Travelscoot scooter to fill in the gaps I can no longer do ( accompanying the family when on cycling trips, shopping with friends etc) and mentally this has been great but I would love to hear that it is not necessarily a one way trip to total dependence on somebody else. Any replies are much appreciated, Cheers, Sally
Hi Sally I was diagnosed 1994 and was told last year SP i think it’s more likely to be longer though 
I kind of guessed I was as struggled more and more over the last 4 years never recovering from relapses legs been the worst ever, I didnt know you could still have relapses with SP but proved wrong when all sorts flared back up again over the last 12 months. I have to use a stick now and can only go short distances before I feel like I’ve hit a brick wall. Like you I have to use my scooter for longer journeys, like shopping etc. I’m trying to stay positive and try do as much as I can without pushing myself too much not yet dependant on anyone and hope I never will be, but who knows what the future holds!! Try not to think about it too much and live your life as it comes day to day that’s what I try and do. Take care Sue x
Hi Sally,
I ‘moved’ to SP last year but like you I think it’s more like 4 years. I’m finding it difficult because the last year has seen a drastic change to my mobility - using stick and rollator and in need of a wheelchair which I’m very slow to admit to myself. Every week seems to get a little worse but as you said - everybody is different.
Like Sue I’m trying to stay positive but it’s not always easy.
The travel scooter sounds like a great asset to both of you ladies.
I’ve been told that too - that nobody, including doctors, can give you an answer as to what the future holds - so you have to live in the present - easier said than done I know.
Best of luck
Marie x
Hi, i was diagnosed 1992,with rrms,then was told it had turned to spms,of which i had already suspected,for a few years,2005 i had a very severe relapse,thats when i ,suspected i had gone to secondary progresssive,it was confirmed bt a neuro,that i was sp with relaspes,my relaspes just got more severe,and took me a long time to ‘get over’
then at my last hospital appt, another neuro,said i am still rrms,so now i wonder,i dont know what type i am, all i know is i can do less and less,
i never seemed to get back to normal,like some with rrms do, right from the word go in 1992,my walking was badly affected,and i could only walk a a short distance,which got less and less with each relapse,i am virtually housebound these days,but i have sort of accepted it,i still enjoy what i have still got,which to a lot of people,not that much,but i can still get up on a morning,and get going,some days are bad, some are really bad, but some are ok,and some are good.i see my little grandaughter every day,she gives me a reason to laugh and be happy,and when i look at her,i know i have still a lot to be thankful for.
i have had ms for 22 years,whatever label.
I was dx in 1995. I never had relapses but now I have a SP dx. (3 years) Personally I think I was Primary Progressive from the start but who’s counting?
I was relatively OK for a decade but then went – stick, crutches, rollator, wheel chair. In about 2 years. I personally prefer my wheelchair to all the stumbling and falling that went on before it. Without my chair I would be housebound but with it I get out and about a lot.
Compared with many, my symptoms are relatively mild. I am still able to live an independent life.
Jane
Many thanks for your comments. Much appreciated .