Hi there
This is unclear to me. The MS Trust says " The change from relapsing remitting to SPMS is gradual and people may continue having relapses or show signs of new and active lesions on MRI scans while at the same time their disability increases.
Does this mean you HAVE to have new and active lesions or not? I thought you could degrade under SPMS without any active lesions…
My English teacher would not have been impressed!
Thanks
Hi
I think the transition from RRMS to SPMS is a nonsense. It’s really about NHS Trusts finances and to the costs of pharmaceuticals and it’s often age related.
If you are RRMS you stand some chance of receiving DMDs but if the medical professionals class you as SPMS then there are fewer chances of you getting any DMDs. Plus it’s a postcode lottery situation to top it all.
Problem solved 
Hi Druss. Good questions and ones which puzzled me for ages. If you search for Gavin Giovannoni he has a lot to say on the general topic. He is a Professor of Neurolgy at Queen Mary University and Bart’s NHS Trust ( and several other things). As I understand his view he doesn’t consider that there is any significant change from RRMS and Secondary Progressive- as he says ‘ , MS is MS’. Some progression starts from the outset and relapses can take place throughout. Again, as I understand it, the categories are at least in part to do with some strange aspect of obtaining drug licences. He is definitely worth reading and you can sign up for his updates and reports.
P.S in connection with progression he talks about ‘smouldering lesions ‘ which also make sense . Again look up Giovannoni and smouldering lesions.
I think he views are reflected increasingly in the medical world ( but probably yet to make their way into the depths of the NHS) and certainly when I see my MS Nurse I always make a point of talking about smouldering lesions, progression during RRMS etc
As @Hank_Dogs says, look to Prof G for some clarity.
In a way you are cross-connecting two different things. New or actively developing lesions are not the same thing as worsening symptoms. Well, not directly anyway. With RRMS, worsening lesions is detectable and indicates inflammation. However, as you transition to Progressive MS, the disease continues to develop without obvious inflammation - hence the phrase “smouldering” MS and your condition can worsen without relapses or remissions, in which case a more sophisticated definition of MS is required. As I understand it, those that subscribe to the “smouldering” theory say that the progression with NEIDA (no evidence of inflammatory disease activity) is the Real MS and that the inflammation during relapse is actually the body fighting the disease, not the disease itself.
This unified theory of MS is gaining wider acceptance and appears to be backed up by recent research, though there are still some pockets of believers who see RR- and SP/PP- MS as different diseases. With 85-90% of MS-ers being of the RR- variety, most current knowledge and treatment is based around that. There are far fewer meds that are effective against Progressive MS.
At a practical level, us MS-ers just want to know which meds are going to work! During transition from RR- to SP-, the old meds aimed at calming the inflammation (a symptom) could well become ineffective against the underlying disease. Also the practical knowledge of operational staff of how to best treat your new manifestation of MS may be thinning out too.
Apologies! Trying to keep up with the research end of things can be compared to those old explorers seeking the true source of the river Nile!
You don’t have to have new and active lesions to be classified as SPMS. It’s possible to see a progression in disability without new lesions showing up on MRI. The progression can vary from person to person tho
Thanks everyone. I suppose it’s in the very label itself. The word Progressive means it’s progressing and therefore the use fop the word is tautologous. That’s where my confusion was coming from. If it was no longer ‘active’ it wouldn’t be progressing anymore and pone would have moved onto what Giovannini has talked about with ‘Burnout’.
Again - my thanks
Hey, to answer that in my case and I’m sure others will be in a similar situation… I have had no new or active lesions and I have been getting weaker and worsening for the last 2 years. Unfortunately my scans show nothing active or new, so I cannot be offered a dmt.
Welcome to the forum GG. This was all kicked off by this article (https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/siponimod-mayzent) which says that this is a DMT that can be prescribed for ‘active’ SPMS. The first time I read it I didn’t see that active means presence of lesions - D’oh! So I’m in exactly the same boat as you. One feels abandoned and it’s very much down to self-management and getting support from your peers - like on here!
Tbh when my neurologist told me dark lesions don’t even show up on an MRI, I just thought to myself the worsening symptoms are just down to multiple sclerosis’ natural progression, call it SPMS if that is the case.
JP