I was diagnosed with RRMS in 2007 and i have been sort of pottering about going about my life the best i can. I had to stop work as i became too ill with MS and now im sort of wondering because ok i did get a liittle better with relapses regarding my optic neuritis, but i feel i have been on a downward slope as far as my mobility and balance are concerned and now use a walking stick all the time,as well as having constant bowel incontinence for over four years now! That aint funny in itself!
I am still on copaxone at eh moment but my neuro has mentioned that i could be going into the secondary progressive stage of MS and not to worry as it could take years. Ok im not worrying but would like to know what this means and if anyone else has had the same scenario, or could explain this to me as its too confusing for me so would like to hear anyones experience in laymens terms!
Every one’s experience of MS is different so my experience for what it’s worth…
My diagnosis came straight in with Secondary Progressive in 2006. I would say that since then there has been a slow but steady deterioration in my mobility. I was still working till last year, when the chance of voluntary redundancy with early retirement came along. I grabbed it with both hands!
The good news is that I don’t get relapses and wake up fairly well as I went to bed.
It may be helpful for you to know that progressive MS can plateau so nothing is inevitable and the future is as uncertain for us as it is for the rest of the population.
I always thought that I had the relapse remit variety, but when I was alone in my neurologist’s den, I looked at my notes and saw that he had written: “secondary?” so he was obviously thinking much the same as I was. I have had MS for 26 years after all, and this seems about the right time for me to slump into the other (s.p.) club. From what I understand of secondary progressive, this comes after the relapse remiting phase, and is therefore secondary to it. I believe that we still have the usual relapses, but that our bodies are less able to recover from each of these. As a result there is a slight downturn in form, but this seems to be very hit and miss. My friend in Kent has s.p. and he has amazed his doctors because he just doesn’t seem to get any worse. I was also warned by a medic that the term secondary progressive is a very elastic one and means different things to different people. Confusing isn’t it!?!?
Everyones experience is different. l have been SPMS for nearly 30yrs - Right from the begining. l can’t say my disability is much worse now then it was at the start. ln fact my speech was very slurred. Now its not. l am like you bowel/bladder problems. Coloplast do a Peristeen system for 'Predictable Bowel Management. Contact them on 0800220622 - you can get it on prescription. lt allows you to decide when you want your bowels to work and not when they decide to let you down. lf you have the Pathways mag it is always advertised in there. They are very helpful and prompt. This will make a big difference to your life. l have a supra-pubic cath - which had been a life-saver - had it done 15yrs ago. So don’t despair - there are ways to make your life easier.
I too have problems with bladder and bowel but am managing symptoms (most of the time), with self catheterisation, Movical lots of high fibre, fruit and veg and have stocked up with prunes.
Last year, after having 5 mild relapses all in my feet my nurse told me that this is not 5 but 1 relapse and is classic S/P symptoms, as having more and more MS symptoms shows this.
I believe that everyone is difficult, I know people a lot older than me who walk better than I do and a woman much younger who is permanently in a wheelchair.
It is difficult to say how the progression will affect us. Some people do not seem to get worse after their relapses stop. My walking is becoming more difficult and I use an electric buggy. Some days my legs just don’t want to move and other days they are noticeably better.
I try not to give in and keep exercising when I can.
Hi Jayne -have had MS for 50 years. The first 30 were hell with R/R but then went into SP and although I can’t walk far or do much, I haven’t been into hospital for IV steroids since then. I solved the bowel incontinence by getting colitis , having my large bowel removed, and getting a permanent poo-bag! As far as I’m concerned, I’ve got no worse at all since going into SP. Was in hospital three or four times a year with R/R. I know which I’d rather have!
Thanks for your replys and it sort of makes me feel that im not alone and i have to go with the flow!
Doesnt seem to be such a doom thing as i had in my mind and some of you even say its been better than RR anyway as it seems more predictable and not so many rapid changes.
Once again i thank you for reassuring me a little!
Take care and have a lovely Christmas and all the best for 2012
Hi, like most people seem to have posted here, my story is moving slowly from rr on to sp It is a label and that is all as we all suffer different symptoms. I have been using dmt since 2004 and have just had two relapses in 7 years. Yes my illness has progressed but 26 years after diagnosis I can walk with a stick on good days and get about with a mobility scooter on bad days.
Good luck to all who suffer with whatever version/name of your illness.
Hello Jayne, as others say - it’s just a label. I have been diagnosed as SP for 6.5 years but probably was SP for 3 or 4 years before that. I have declined gradually over that time, but still get by and do my best to live as normal a life as I can.
I was very lucky in that I was either ‘benign’ or very low relapse rate RR before then because it is nearly 26 years since my first MS symptons.
I have recently read George Jelinek’s book and am taking some tips about how to live my life from that. good luck Jayne
I have just read your post, i have resently transitioned from releaspe remintent into secondary progressive MS i must say that from my experience it was awful i got the feeling in my brain it was like you were there and someone else had jumped into your body and controlling you i was diagnosed roughly in 2013, you can have MS in your system for years and not realise, from what i have been reading in its in your system for 10 years before you even realise you have ms but that is here say, you will now when you have transitioned from one form of MS to another MS, i understand about you given up work to handle your condition its an impossible position you are in.
I myself will now have to go to a review which is stressing me out, What i dont understand is ms is one of those conditions that gets worse not better they have to put us through.