Last reply 2 days ago
RRMS TO SPMS

Hi,

I was just thinking they say rrms progresses to spms.
And it usually is 10 to 15 years after being diagnosed.

I would like to know other peoples experiences, if they would like to share.

I have been diagnosed since 2010 with rrms, but had symptoms since 2007.

Main symptoms numbness from waist down on movement since 2007.

How would you know you have gone from rrms to spms ???

Thanks for any replies.

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calnffc
2 days ago

Hi, I asked the same question on here just a few weeks ago as I’ve started to feel worse and also been diagnosed for 10 years or so now,this video posted helped me understand it more.


highlander
2 days ago

@ncm22
Speaking from personal experience…..
Your neurologist will have a pretty good idea of when it may have changed to SPMS but they will insist you’re still RRMS….
The reason being that once your diagnosed as SPMS there are no DMTs licenced for SPMS in the UK.
And the powers that be could stop you having anything.
So until one is licensed keep it an unspoken secret.
As my nuero told me, your arms are still working….who knows what might happen if you stop talking them.
So I left it at that.
Our little secret.


bullman
2 days ago

@ncm22 dx 2003 now hoist & wheelchair dependent. Stopped work 2018. Started RRMS now SPMS. If you have a mortgage check whether you have critical illness cover. If taken b4 the dx then you could be covered


itsmewithms
2 days ago

My neuro has shifted my diagnosis to SPMS from RRMS as I have continuing disability but no new lesions. At the same time I have moved from Rebif to Ocrevus. In the US that wasn’t challenged.

Glad someone pointed you to the Dr Boster video on progression. He will also challenge these “classes” of MS as definite buckets and I think that is a good point. Just because I am now classed SPMS doesn’t mean that I can’t slow the progression and/or have it quickly progress. So – I need to take care of myself and do all I can to resist progression but I don’t fear a sudden attack as much as I have in the past. For me it has been more stability-

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