The general "rule of thumb" is that...

MS is a two-stage disease, with initial attacks of inflammatory demyelination, which damages myelin, followed approximately 10 years later by a slow, progressive neurdegenerative phase marked by loss of axons and nerve cells.

http://home.ix.netcom.com/~jdalton/ms-two-stages.pdf

http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg

jackD

p.s. It is hoped that intervention with drugs CRAB might delay or prevent this.

It's my understanding MS IS a progressive disease.

I think that regardless of what label a doctor gives it, it is always progressing. I know some lesions do not seem to affect anything but any damage, even silent damage, is STILL damage. There's underlying disease happening in the gray matter even if you cannot see it in the white matter as lesions (which we see in MRI images)

We may be able to slow it with drugs, but there is STILL not enough known about MS, what the cause is, who is going to get it, who may only have a "mild" course, who is going to get hit hard, and who will get the worst variety, why some drugs work better for some than for others, etc.

Until there are more answers, we are all blind mice in this battle and all we can do is try to help ourselves and be educated and support each other and those who come after us.

I've always been one to oppose the notion that RRMS will inevitably, systematically progress to SPMS. Whether that's rational of me - or simply hopefully optimistic - I don't know for sure... but I do know that there ARE many people who've had MS for a long time (well over 10 years) who still have the type of progression we refer to as relapsing/remitting.

I've decided I don't care what label anyone applies to my illness. I'll have to make the best of it regardless.

I'm glad you posted on this....

We like to think of the labels as just that, labels. My hubby is spms and in a wheelchair but many with spms are not in a wheelchair. Some with rrms use a wheelchair, some don't. Some with ppms use a wheelchair, some don't.

It's a toss up and something I think docs just use as a reference point in the progression. Rrms tends to have more flares with some improvement after said flare whereas spms tends to have fewer flares with little or no improvement if that makes any sense. If it doesn't make sense, your not alone. lol

There was a time my hubby was told he was rrms, then the fun began. He was told spms, chronic progressive, then primary progressive. This went on for a couple of years until I finally told the neuro to pick one and stick with it. He chose spms. haha The neuro said based on Jim's progression they were having a hard time deciding which stage he was in because he would improve, decline, go long periods, etc. So, if it's confusing to the docs it makes sense that it can be for us too.

Like Becca, we don't really don't give the labels much thought anymore and just do what we need to do to carry on. After 22 years you just go with the flow.

to you.

Thanks for all the great feedback folks! I've not had much time to check the boards lately (working a lot, overtime woo!). A lot of what you all said makes a lot of sense. I guess this is one of those 'leave it to the experts' subjects (but who's to say who's an expert right? heh!).

Since it really doesn't matter what label is put on the disease, why worry? The current CRABT treatments are for RRMS so most Doctors will call your MS that. I don't care, no matter what they call it I have to live with it.

Ain't that the truuuuuuf!!!