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RRMS TO SPMS

Hi everyone, I have rrms. Been diagnosed since 2010 even though had symptoms since 2007. So nearly 14 years. I believe rrms progresses to spms, after I think 10 to 15 years. Does that always happen ? Also how would you know ? Is it via mri’s you would find out ? Any advise or help would be appreciated. Thanks in advance for any help.

I’m not an expert, but I don’t think that’s correct. RRMS can progress to SPMS, but it doesn’t necessarily happen. The only way you would know would be if you no longer have bad spells & remissions and just have a steady decline.

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I’ve been thinking the same.

So we are the progressive people.

Anyone for prog rock?laugh

I think this is now really complicated because of the impact of DMTs changing the “natural progression” from RRMS to SPMS. Is the lack of relapses because of the drugs or having passed that stage?

I have not seen anything that helps with this. Some neurologists seem to take an approach based on age others elapsed years still others are reluctant to call the change as it would mean the DMTs are no longer justified. Another school appear to use the EDSS scale.

Not sure if anyone else has uncovered anything more definitive akin to the MS initial diagnosis?

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Hi, yeh, RRMS can progress to SPMS…but not in every case.

It will let you know it’s happening by more frequent attacks and fewer calmer times. Or possibly you are left with enhanced symptoms causing more disability.

The best thing to do if you are wondering if you have moved on is to speak to your neuro…if you can.

Boudsx

DMT drugs can hold progression back…some people never progress to SPMS at all.

Most people progress from RRMS to SPMS in around 15 years but not everyone does.I knew i had moved on to SPMS after i stopped recovering as well after relapses.Its normal for relapses to get less often in most cases they can do but mine just got more severe and last months instead of weeks.But every ones MS is as individual as them.

I was diagnosed in 2013 with RRMS, in the last 5 years I’ve been classed as “Transitional”, “SPMS”, & “SPMS (with relapses)”.

When I questioned with my consultant the course MS takes in general, the consultant said he would be very cautious of putting a time scale on how MS progresses because it effects each person so differently.

Personally I think the current way MS is titled needs looking at.

I’ve never had obvious relapses after my initial onset, I’ve just declined very slowly from about 5 years after being diagnosed, so around 3 years after being told I was RRMS I started feeling like I was getting slightly worse each year.

My sister has RRMS, yet she’s far worse than me with my SPMS.

I think some people with MS tend to believe they are better off being RRMS, and fear the progression onto SPMS, which I guess is a natural thought process, but the way I see it, especially after seeing how my sister has ended up with RRMS, is theres no “best” MS at all.

As for recognising the progression onto SPMS, I might be wrong but I dont think MRI or any other test can define a difference between RRMS & SPMS, it’s all down to the history of how the MS symptoms are effecting each individual, and are these symptoms getting better or slowly getting worse.

Basically have you been getting worse slowly without an obvious relapse, did you recover back to a level you was a year ago ect ect.

It’s not a simple test that is done to identify the type of MS, you have to look at symptoms, length of time you’ve felt like this, has there been any recovery back to previous levels, has something caused a relapse that might of brought on a relapse that could possibly subside as time goes on (RRMS).

At least that’s how its always been explained to me.

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at my diagnosis in 2007 i ws told I had RRMS.

Recently I am much much worse and wondered whether I’d moved on to SPMS.

My walking is awkward and painful.

However I have accidentally accrued some injuries.

Fractured pelvis a couple of years ago.

Broken toe (I think) which is excruciatingly painful which occured by a huge stack of casserole dishes fallen out of a cupboard and landing on my big toe, the nail of which has since been black.

I have only just found a lovely chiropodist close to my house but lock down means she is now shut.

Ah well worse things happen at sea (remind me never to go to sea).

maybe the injuries have caused a relapse?

anyway the difference is that I felt slightly crp before and now crpper still.

Beware wild pyrex dishes!!

It may very well be a flare up due to injury.

Whether its infection or even injury, your immune system still plays an active role, so therefore you might be experiencing a flare whilst your body recovers from injury ?

my RRMS rapdly progressed to SPMS with relapses. Following a release I was not recovering . A ggradal decline

I have a relative who has had RRMS for about 25 years now. Hasn’t progressed and is very stable. She’s obviously been very fortunate but just shows that it can happen that way. A friend of a friends mum is similar - over 20 years and still RR.