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When do you know you've moved to SPMS?

Sorry, probably been asked a number of times but when do you know or when were you told?

I haven’t had a relapse in a couple of years (lucky me) but I have progression, bladder, bowels, temperature control etc. So when does it stop being ‘lucky me’ and start being SPMS?

I know MS is so unpredictable but is there a criteria? I’ve had symptoms since 2002 and been diagnosed since 2006. I know it doesn’t really make a blind bit of difference, I should and do try to live for the day, but sometimes, just sometimes I get a thought and need to ask.

Thanks for your help,

BFx

Hi batfink. I was told a cpl of months ago my ms was now secondary progressive. I’m 29, first showed signs of ms at 14, properly diagnosed at 18. My condition has worsened showing in a recent mri and had progression in syptoms for nearly year and a half. I struggle with blurred vision, fatigue. pain/buzzing weakness in legs, mainly. Also cognitively I’m not too great, feel like I’m getting more and more dumb over time lol. I was told by ms its mostly to do with how long I’ve has ms for and i guess things being worse and not improving, saying that it seems all doom and gloom but i try and stay positive, i am still me and although i cant do what a ‘normal’ person can do, i still live my life as best i can. It might be different for other ppl and they can move onto spms faster perhaps, I guess everyones ms can be different? xx

was told by ms nurse even!x

was told by ms nurse even!x

As a medical term SPMS is pointless and meaningless.

SPMS can only be diagnosed retrospectively because no one knows how well or otherwise we will be tomorrow.

Thanks for that, I guess I should just move on from that one, what’s the difference going to be if I’m told it’s now SPMS, other than I might feel a little more s**t about it!

Having MS is just a sentence of degeneration and life is too-I suppose, just our degeneration comes more quickly! Aren’t we lucky!

Thanks for your comments it allows me to put life into perspective again,

BFx

I was told a couple of years ago, I was DX in Feb 2007, not sure how long I’ve had it, but when I look back there where alot of tell tale signs that I just lived with, and which I have to say I’m glad about, mine came because since I was DX I wasn’t having any relapses, my sypmtoms just slowly got worse and where with me every day, I’m grateful that mine at the moment is slow, but nevertheless has a massive impact on my life, but like a lot of others on here I just get on with it, it doesn’t matter about the label, but it does matter about the life, take good care, Jean x

Hello,

As I understand it SPMS is when you don’t have any relapses instead you just slip down the slippery slope. Don’t worry, I’ve has MS since 1979, diagnosed in 1995 and recently had to stop work. Not too sure when relapses stopped and it became SPMS. I think it does not matter except for people doing medical trials.

MS is not much fun, different for everybody and the RR side eventually becomes Progreessive and the symptoms seem to be different for everyone. I just live each day as it happens and try not to get depressed.

I was ‘text’ book in moving on to spms i had a massive relapse 2005 after 13 years of rr without too much trouble,then after the 2005 relapse which was the mother of all relapses i moved onto spms,i knew because i didnt recover as well as i had done with the previous ones, BUT i still have relapses some still do, and mine are every year i have a bad one that leave me in bed for 4 months.

everyones different in the way they progress, and i knew i was spms, i didnt really need to be told,so when i was it wasnt such a big deal.

Hiya,

I’ve often thought about that myself. I don’t seem to be having relapses now but i’m sure i’ve progressed. The progression is slow but it’s there, not sure if it’s just the natural way of MS. I kept saying i wasn’t progressing but i am, just fooling myself really.

I did have an MRI in Feb so i should ring the neuro and see what he has to say.

cheers…Mark