Hello everyone, my name is Shaun. I have had MS for 22yrs now. started as RR then developing into SP. Please come and say hi.
Hello Shaun. Welcome to the club nobody wants to be a member of.
Hi Shaun, I was dx 18yrs ago as rrms, been spms for the past 3 or 4 years
I think I’ve had MS for 18 years, but had a handful of singular episodes (so not really RR) but it very definitely went Progressive 5 years ago with a steady decline since. However, I’d been misdiagnosed until the start of this year.
So we’re possibly in the same sort of place right now, having arrived by different routes! Let’s fight the fight
Hi, thanks for the message. I was on Rebif for 10yrs. It was eventually decided i was SP and stopped taking it, only on muscle relaxants now to help with spasticity. I am a full time chair user now.
Hello Cheetah, haha yeah i guess so. I like your profile picture, the cat is stunning. I’m an animal lover with a cat, dog, chicken and tortoise.
Welcome to the forum.
I’m in your gang too. I’ve had MS for almost 25 years, couldn’t take most of the disease modifying drugs and had some very disabling relapses.
So I’m now in the Advanced MS / Secondary Progressive collective. Also a full time wheelchair user.
Hi Shaun I hope you are as well as possible.
I graduated to SPMS in 2007. Fortunately my progression is pretty slow. This forum has been hugely helpful to me, I have learned a lot, and had some giggles too with people who understand how things might be.
The trouble is, you giggle like a little girlie at silly jokes Mick.
Hi Shaun, like you I have spms, but was only diagnosed last year but have probably had ms for 22 plus years. Im on siponimod tablets but they dont seem to be doing much (only damaging my liver!)
Welcome to the site
Hello fellow Taff!
I have a problem with these definitions - rrms spms - bits of us may be heading south but other bits of us may recover i.e. bits of us are rrms and bits of us are spms. I think these categories make life easier for the medics but not for us!
Hello Shaun, welcome to the this very supportive, helpful club.
I’ve had ms for 12 years, the people on here have always been there whenever I needed advice.
ValleyBoy - I must take issue with your comment.
Us lot are suffering with a life-changing condition and the fact that you’ve made it as far as this forum suggests you DO have an interest in the disease. I for one will certainly not entrust the management of my health solely to the medics. Indeed, I make it my business to be informed, to research and understand what is happening to my body and where possible, be involved in optimising my overall health. And yes, at times I will challenge and be an agitant to my health professionals to ensure I get the very best chance of health. They have a heavy work load and at times, challenging them on their own terms is the best way to get things done.
You are welcome to ‘take issue.’
As for having an ‘interest in the disease’ - have been a contributor for many years on this site (different user name.) Yes I have m.s. as sadly does my daughter.
Put simply the point I was making was that if I have say a left leg that is gradually getting weaker but a right leg which is weak at times it is wrong to label me as either rrms or spms.
Sorry GCCK, I do agree with Cracowian/Valley Boy. As he said, he has masses of experience and there is definitely an argument that the terms RR/SP/PP are outdated and less than useful.
There is such a temptation when RR to wonder, have I become progressive. It often puts too much pressure on people, having that ‘progressive’ label to attach.
These days there is often a set of qualifiers, SP with disease activity, RT with no activity (maybe that unhelpful word ‘benign’?).
I described myself earlier in this thread as Advanced/Secondary Progressive because there is a problem with the categories. If I have a relapse every year or so, am I still RR? Or Progressive Relapsing?
I’m certainly not entitled to any Modifying Drugs; too disabled and my MS is too old. So I’m probably not RR now?!?
Hence Advanced. Still a compromise. I understand the need for the old categories. It’s just no longer the full story.
Actually I think we’re all agreeing!
Labels are a convenient shorthand but they’e not the whole story. I see what you mean now about leaving it to the medics to play around with their labels! I try to burrow down below the labels and try to identify the processes - my own diagnosis is also shrouded in confusion & contradiction.
A g r e e
Spot on Sue.
When using these terms we have to consider the psychological implications - being told or telling relatives/friends/colleagues that we have Secondary Progressive Multiple Sclerosis isn’t going to fill anyone with optimism.
Think I’ll settle for calling it f****** m.s. !
Why is it the left leg that gets weaker?.same as mine.like I drag my left leg now.new to the site.it I’d nice to hear from people that have the same illness