In about 85% of MS folks the 10 year rule applies (taking a Disease Modifying Medication may extend this for many years)

And what's that percentage for people ON DMD's?


So cheer up things WILL get worse.

Well aren't we a ray of sunshine!!!

I have been dx in 2006, but can trace back my first huge flair to 2001. that makes 9 years for me.

The big girl hospital told me that SPMS has an inflammatory component to it, and they do keep trying steroids as long as the patient shows improvement with the infusion (which I am) and that they will even continue some RRMS treatments such as copaxone. They just really hesistate to move someone to that catagory, unless they are kinda forced to.

One website said inflammatory follows all the way through, and one says NOPE, its only in RRMS, and yet another give a mixed view. If nothing else, this disease has confused me thoroughly.

Thanks for the spiffy drawing!

My first BIG flare was in 2003. Both of my legs were numb and I assumed I had a pinched nerve. No other sx....jut the numbness. So I guess I've actively had MS for about 7 years.

It was two years after that first big flare that I had my second (even bigger) flare. Double vision, numbness, balance, etc.

I tend to think I'm probably SPMS, too. But, my neuro hasn't changed my dx status.

Right now it seems that the visual sx are what I predominately have. If I had to choose, I would have something be numb (besides my right hand/arm. It already is.). Visual sx are awful.....they affect every aspect of your life. Not saying the numbness is any fun.....but at least I can see where I'm going.

There are exceptions to every rule, including Jack's favorite 10 yr rule.....and after all, most of us are exceptional, aren't we?

I had my first big exacerbation in 1975 with SX back to 1964. I didn't become SPMS until around 1998. I'm not in a WC, although, I use my scooter most of the time.

I think my age is now in the SP stage, too, though.

I've had just one truly massive, disabling flare and that was in 1995. It got me diagnosed, although I had dealt with symptoms coming and going for 4 or 5 years prior.

The primary area of attack for me has always been my legs. Some time in 2003, without any noticeable flareup, my walking and balance just started getting worse. In my opinion, that increase in disability without a distinct flare was the hallmark of becoming SPMS.

However, I have had flares since then, too. But also a gradual progression of disability. This could be because the attacks keep hitting the same areas and I end up with axonal damage. Or that glutamate thing that I don't quite comprehend yet (must read more).

At any rate, I think it stands to reason that repeated myelin destruction in the same areas along a nerve axon will result in permanent effects. All the more reason to battle inflammation and modify disease activity as we are able.

The big MS center is now having a huge debate over me. Since they have figured out that my "MS hug" or "flipped intestine" or whatever this is that keeps happening is actually pancreatitis, it may have been keeping those exascerbations going, and there fore, may not be a "true SPMS" so, for now, I sit and wait for this latest event to settle itself, and get over the latest insult, before they re evaluate what is truly happening.

Just like any infections, colds, stress, or whatever can keep MS stirred up, I bet this whole thing has been stirred from the pancrease thing.