Have you heard of?

How many of you have heard of MS in terms of Non-active and Active. I have non-active Secondary progressive MS.

[BlanketTime1]

i haven't hear of this. could you tell us more about it?

[Hidden in reply to BlanketTime1]

It’s one of the rarest forms of MS that I know of. Non-active means that it is always active and constantly taking a little bit more in a little bit more away from our ability to function. I know it sounds crazy because it says non-active but that’s what they call it. So the disease keeps progressing constantly.

[BlanketTime1 in reply to Hidden]

that is an odd way to name it, though neurologists...😐. thanks for explaining.

[Spanishpopmama]

Ok that sounds awful. I would think that nonactive would be a good thing. I have not heard of that and I try to stay really ninformed.

[Hidden in reply to Spanishpopmama]

I hadn’t heard of it till my dr brought it up.

[jimeka]

That’s confusing, you would think that non active meant exactly that. No activity? 😊

[Spanishpopmama]

I am sorry...that sounds scary! Are you afraid of the future? I know I am....what are your current symptoms.

[kdali]

Yes, the term was used to widen the use of medications under some FDA regulation I can’t think of now, but you’ll see some newer trials that have evaluated a medication for relapsing and active secondary, etc. I believe Kesimpta was one of those.

[Raingrrl]

The terms active and inactive in SPMS seem to refer to relapses not really progression. Active means relapses and inactive meaning no relapses. The NMSS has a good explanation of the terms.

nationalmssociety.org/What-...

[Frances_B]

Active and inactive are used by some people to refer to inflammation independent of relapses. You can have active MS and no relapses, but you can't have relapses if your MS is inactive. A lot of this is semantics, and amongst neurologists there's always ongoing arguments about terminology and labels. Non-active SPMS can't really exist - if your MS is progressing even with no relapses, then your MS has some degree of activity going on.

[Raingrrl in reply to Frances_B]

I agree Frances_B ! It is semantics and even the link I posted to the NMSS definitions provides a convoluted explanation. It’s at least a reliable source as opposed to some doctors use of the terms. It’s annoying that doctors can’t even agree on some standard terminology. I think that might be partially because of the insurance companies. If you are labeled a certain way, insurance won’t pay for certain treatments. It’s all a racket.

[Frances_B in reply to Raingrrl]

I agree in many ways - and the NMSA page is largely tying the terms of active/non-active to inflammatory activity.

However, "insurance" is different in different parts of the world - but from an "outsider's" perspective, it often seems that the USA is especially bad for "insurance" companies trying to wriggle out of paying for things. From some reading I did ages back closer to when I was first diagnosed some of the labels used with MS came about so that MS could be called an orphan disease to enable drugs to get through FDA approval processes more quickly in the USA. Sometimes I think the thoughts of some neuros around using terms such as NEDA (No Evidence of Disease Activity) and NEIDA (No Evidence of Inflammatory Disease Activity) are more valid than the active/non-active labels. Regardless, we are still stuck with a crappy life altering disease, no matter what label is used.

Less semantics and more research into non-relapsing forms of MS is what I would like to see. However, as a person who is PPMS, I'm a bit biased on that issue - but I don't think anyone can blame PwPPMS for getting fed up when there are now many existing drugs for treating MS where relapses are involved, and new drug trials always seem to be for the relapsing forms of MS while us PwPPMS are basically left out in the cold as far as treatments go )

[StacyHayward]

I guess I have inactive secondary MS by that definition. I definitely have MS. I’m slowly progressing downhill. But I haven’t had a true relapse in about seven years and my mri is stable.

[jimeka in reply to StacyHayward]

That’s good news as regards your MRI, I am sorry that you are progressing. 😊

[CalfeeChick CommunityAmbassador]

I read it in a book I picked up a couple of years ago. My friends mentioned they were concerned because I was started to be very heat sensitive 1-2 yrs before my diagnosis. I had just chalked it up to meds I was already taking and age. At 68 yrs old, I was a long distance bicycle rider, riding 200-300 miles in a week. Those days ended when I woke up numb 5 yrs ago!

[ALARAW]

I always thought progressive is constant without active or nonactive times.

[Hidden in reply to ALARAW]

Sometimes for me the progression in different parts of my body are so gradual that I don’t notice until it progressed to a point that I picked up on it. So much of my body doesn’t work right that it can get missed for a short time.

[twooldcrows]

i always figured we all were progressing along with MS some faster than others and depending on if taking what ever meds makes a difference also ..we all face it different...

[anaishunter]

following on this chain of posts. just read this. I did not know about these other types of MS (fulminate, burnout)... I'm not even sure which one I have given that I never had a relapse after my diagnosis thanks to DMT. I can only hope that burnout is where we'll all land as we age. practicalpainmanagement.com...

[greaterexp]

Dr. Brandon Beaber also has some videos on YouTube in which he addresses these terms.