We have a fairly new MS specialist at the local MS Clinic. He's only new to us, not to being an MS Specialist.
I've seen him twice now and when I asked if he'd thought I'd transitioned to Secondary Progression, by reviewing my records? And he said, "The TERM Secondary Progressive MS is going away, so we're not going to worry about that."
Is this true or should I go back to seeing the .A. I used to see?
P.A. .....oops!
Hi cassielynn71 hmmm. what is it going to replace it with? smouldering MS? I've heard that term and yes, my doc used it recently.
😯😯😯 Smouldering MS? Are you jk, or are you serious?
no, not jk. what did your dr. call it if not secondary? Smouldering means it would have deteriorated more with relapses if not for DMTs I believe. not relapse but not exactly (primary) progressive. If someone else knows more than i do, please correct me.
Sandy, I have heard the term Smouldering MS too. I think it's much more accurate that SPMS.🤯
I asked my neuro about me being SPMS, he laughed at me 🤣😂 I love my neuro! I think for awhile it was because there were very few SPMS approved DMTs? Now there are alot more? So IDK🤗💕🌠🎃
Both of my ms specialist advised that I had probably moved on to SPMS from RRMS. It was explained that where I don’t have the reoccurring relapses like I use to that I have a slow progression of ms. Still have the ms lesions but they are not active and no new ones forming. 👍🏼🙏. Coming up on 28 years of being diagnosed. Don’t know if this helps but it’s the way it was explained to me 👍🏼🤪
yes! even though the medications still work for secondary if you are diagnosed with spms the insurance won't cover it. hello does this make sense? so the doc may have to diagnose rrms for insurance purposes.
l think it just changes on a whim🤣😂🤣🤗💕🌠
Like Sandydemop said, if insurance does not want to pay for dmt if dx secondary, then I'd leave the dx RR. You know how you feel. Don't need acronyms to define your MS. I have RR so I don't know what occurs at the Dr differently if you transition to secondary.
Nope, he never mentioned Smouldering. I honestly didn't know what to say. I'm not so quick with processing conversation on the spot. Even with my people in my circle (close friends/family). My symptoms don't relapse & remit. They're quite steady. I'd just like something in my record for future possible disability.
It just surprised me since I haven't read a single thing on MSAA or anywhere else indicating his statement to be true. I
If anyone has a link to any articles about this, please post. I would be interested in reading up on this. Thanks everyone ❤
There's quite a bit of discussion about this in places you probably haven't looked, or don't know where to look. If your new neuro is talking the way you described then at least he is up-to-date on current research and thinking, and is not a fossilised obsolete variety of neuro. It could be worth your while having a look at some of the work of Prof Gavin Giovanonni (here's a site he has set up specifically for PwMS, you can also ask Google for other research etc that he's done/ doing).
sites.google.com/giovannoni... .
Prof G used to be part of the Barts Blog, but that site had to change a while a go - it is where you will find some of the most up -to-date info on MS research, clinical trials, etc.
multiple-sclerosis-research...
Also note that you often won't find much current research info or discussion on "generic" sort of websites - usually the info on those tends to be rather homogenised and pasteurised and served up in simplified chunks for consumption by the masses.
If you have a Facebook profile it's worth following a page called MSTranslate, and their normal website has a lot of good info on it.
Thank you!
I think now all MS is thought to be progressive? After a relapse there is often a failure to fully recover and/or the lesion from a relapse may expand causing further debility over time (shoulders)🤷♀️ All somewhat confusing…and unclear how impacts choice dmt except that there’s a continuum b/w inflammatory process —> degeneration…it’s early and my brain isn’t on yet 😜
And what if there has been no relapse? I was diagnosed with RRMS.
from things I have been reading I won't be surprised if they rename everything. Smoldering fits me better than any other term. From the beginning I would get new symptoms that never got better but then would be stable for a while until some more symptoms came. Now my disability is slowly getting worse even though there are no new lesions. So didn't feel I was RRMS since symptoms never remitted but also not sure I fit in the PPMS criteria either. I didn't push to be diagnosed with something other than RRMS since it keeps all DMTs on the table for me.
I just want effective treatment. Hoping some of the new research going on will find new treatments. Would love to find a remyelinating therapy before it is too late for me.
you should read Dr Giovannoni MS selfie newsletters. He explains how the thought process for current terms don't really fit.
I too was diagnosed with RRMS, but have never had a single relapse. Now several doctors have told me I don't have MS.
Interesting! What do they think you have?
Neuropathy
I was just diagnosed with active secondary progressive because of a “possible “ new lesion on my mri. My neurologist is older so I don’t know if his diagnosis is outdated, I was a little upset to get it but he also told me” I think you’ve beaten this ms thing”. That made me feel better but a little confused. I feel great and that’s what matters.
For SPMS, my previous Doc claimed that it showed progressive deterioration in the problems one already has but there are no new lesions. Please not the word PREVIOUS.
hi asked my doctor that since my MRI showed new new lesions and no active lesions but my symptoms were still getting worse I asked her what was going on and she said that it’s smoldering MS
wow ...
Thanks everyone ❤. Yes, it's just bothers me that I'm on so many meds but I'm not feeling great. Muscle relaxers but the muscle pain is still there. Some days worse, some easy to ignore. The more I work my legs the weaker they get over time (not the immediate weakness from tired or worked muscles). There's more but, I just want to know does ANYONE feel good daily or almost daily? I've never had a relapse/ exacerbation that affected my legs to begin with. Just a couple bouts of spasticity. I fall if I don't consciously place each foot. That's been happening for a decade. But..... Idk. I miss me.I WANT to feel more able. I miss actually FEELING more able.
I feel that if I had gotten a SPMS diagnosis it would make sense to me why I can't have a single symptom free day....?
Secondary Progressive taking Copaxone
Blood tests to track MS progression
