Smoldering (smouldering) MS
I searched and didn't see any discussion of smoldering MS. Apologies if this has been discussed and I just couldn't find it.
I am constantly searching the medical lit re: MS and CIS (my diagnosis).
I came across a number of peer-reviewed papers in respected journals about "smoldering MS. "
"A large proportion of people with multiple sclerosis (MS) continue to experience clinical deterioration despite a lack of overt ongoing
inflammatory disease activity. To this end, such patients exhibit
disability progression despite being relapse-free and exhibiting neither contrast-enhancing T1-weighted (T1w) lesions nor new or enlarging
T2-weighted (T2w) lesions on magnetic resonance imaging (MRI). This is often referred to as progression independent of relapse activity
(PIRA) or smouldering MS"
This describes me to a T. For three years, no new lesions. I have my annual MRI coming up at the end of April.
Another paper on this subject says that the lesions (not new lesions) are "chronically active" and that some chronic active lesions on imaging can be determined to be paramagneticrim lesions orPRLs).
I plan to ask my neuro about this and what it might mean in terms of treatment. I have not been on any DMT and would rather avoid it but I also don't want to end up not being able to walk.
Has anyone here had their neuro mention smoldering MS? If so, what (if anything) did they suggest by way of treatment?
Thank you so much for starting this forum. You're definitely not alone in wanting to know more information about smoldering lesions and you asked such a great question about treatment concerning them. While we wait for others to see your forum and hopefully share their experiences, I wanted to share that we wrote an article about it a while ago, which I'll link here - https://multiplesclerosis.net/clinical/smoldering-lesions. The article I linked focuses on similar NIH studies that you linked, focusing mainly on whether these smoldering lesions were associated with more severe forms of MS. Unfortunately outside of that information, I don't have much more to offer but am extremely interested, as you are, to hear what other people's experiences are with smoldering lesions. If you don't mind coming back and sharing what your neuro says, I know I'd certainly be appreciative! Thank you for posting such a great question!! 🧡 Kayleigh, MultipleSclerosis.net team 
Hi,
(Ellen)! I love that you have such a heart for research when it comes to MS! You always post really great questions that frankIy, I can't always answer. But, I think asking those questions is really important. I can't offer anymore insight than Kayleigh already did, as Smoldering MS (or smoldering lesions) is still kind of not well documented. I do hope continued interest and research brings this particular issue more to light.
Best, Erin, MultipleSclerosis.net Team Member.
