How do you know?

[dm0329]

How do you know when you transition from Relapsing Remitting to Secondary Progressive MS?

Although my last several MRIs have been stable (no new lesions) just the same old damage (lots of T1 & T2 lesions), I wonder if I am SPMS? I know not to put too much on a label, but I continue wonder.

What's known? MS Progresses (20 years since dx) DMD: Slows Progression (Avonex 16 years) Last overt relapse: 2007 (left side numbness several weeks left residual damage). 2003 bout of ON also left residual damage.

Now, I am in my mid-40's and my sx have gotten worse (fatigue, bladder, balance, etc.) but doesn't everything get worse with age? I still "look so good" but I've been on SSDI for a few years now. I am so thankful for SSDI.

Avonex is a lifelong commitment and I maintain tx. Because of rx laws, I know a SPMS label is a barrier to many DMDs, yet I still ponder the SP transition.

Why am I "obsessed" with the SP label? Does it even matter? Simply seeking feedback from my fellow MSers.

Thanks, in advance, for chiming in!

[JerryD]

IMHO that question is best discussed with your neurologist. It's his/her opinion that your insurance company will use as the basis for all of your treatment options. And, as you know, there is no FDA approved treatment for 'progressive' forms of MS. So your doctor has to be your advocate when it comes to your treatments and insurance issues. I wouldn't put much value on 'transitioning' to SPMS from RRMS. There isn't much your doctor can do for you. Good luck

[DebbieB]

I agree with JerryD, I wouldn't get too hung up on the definition...but I certainly understand your curiosity. The MS Society has a page explaining the difference in "types" of MS. See:

http://www.nationalmssociety.org/abo...-ms/index.aspx

I took it pretty hard when I transfered from RMSS to SPSS, primarily for the reason JerryD pointed out - there's no treatment that's FDA-approved for SPSS or PPMS. It sucks.

Like you, I've had MS for awhile (since 88') and was RRMS for about 20 of those years. I think you'll find that the longer you have MS, the greater the risk of transferring over to SPMS.

[Thinkimjob]

Hello. They will not call you SPMS until you are completely stuffed. Why? Oooh, well, while you're RR they can still prescribe enormously expensive, marginally effective, dmds or DMTs as they are now to be called.

Once you're officially SP, it all comes to an end. Love to know why one month a drug will help me immensely, and the next it will do nothing.

I am as SP as one can be, but no one will call it. They keep doubling down. "Take this, and your flares will stop by ooooh not 30%, but 50% or even 72.5%!", never mind the side effects.
And oh, these new drugs, you're so lucky! No needles every day! I can hardly walk, like I give a fat rat's about giving myself an injection.

Cynical? Probably. Realistic? I think so.