SPMS and Exacerbations

[drstines727]

I've had SPMS since 2001 and experienced slow, steady progression the entire time. In November 2011 and January 2012 I had severe relapses. Both left me with a lot more disability. I thought once you had SPMS you wouldn't have exacerbations. Anyone??

[muse_7]

I think it is different for everyone. Some have a slow, steady progression. And others have exacerbations that leave increasing disabilities. Frankly I don't think the P's and S's mean anything. Our disease is as individual as we are. I hope you are able to slow things down again.

[Redwings]

One of the info pages on the NMSS website sums it up this way: "... over time, most people with SPMS experience fewer inflammatory relapses or none at all."

So when you consider that most doesn't mean all and fewer doesn't mean none, relapses are still possible in SPMS. MS is unpredictable, and your experience shows that relapses [I]are[/I] still possible. What would be unusual is for you to have gone 10 years without a relapse (you didn't mention that you'd had any relapses during your 10-year, slow, steady progression) and then have 2. That's atypical enough that some doctors would write your case up for a medical journal. Then the next time somebody wonders if relapses are still possible after a long stretch without one in SPMS, your case would pop up in the medical literature. You could be famous in an anonymous way.

[drstines727]

Thank you Redwings for your response. At least I can look forward to fame - maybe.

[tellnhelen]

Sorry for your trouble..hope things improve you quickly.FYI my neuro reclassified me from SPMS to PRMS to account for the relapses. It must be freightening to be on that slow "train" that seems to pick up speed from time to time. Unfortunately I'm on that train too.

Ilook for ways to fight back...maybe regular exercise or PT to address specific concerns. You know the drill...the diet may be affecting you. Check it out.

Finally, talk to the neuro about your sxs. Maybe a different med will help.

Good Luck. I have a new motto now: you only have three choices with MS. You can give up, give in or give the battle the best you have

[Sequoia]

Some neurologists think there's a stage between RRMS and SPMS, Secondary Progressive with Relapses. Unfortunately, it doesn't lend itself to a catchy acronym. SPMSwR?

Anyway, they see it commonly enough to give it a name.