When does RRMS become SPMS?
 

I've been wondering about this one for a while now.

I'm RRMS, and I can tell you for sure when I'm in a relapse, and I'm usually pretty sure I'm still in remission (and I haven't had a relapse in a while).

With that said, when does RRMS become 'reclassified' as SPMS? Is it based on the 'disability' scale? Is it the lasting symptoms? When does one cease remission/relapse periods, or is there a fine gray line between these 2 classifications.

Example: I'm RRMS. I have a bunch of symptoms before dx, I have IV Solumedrol and enter remission. I have another relapse later on, and following another course of IVSM, I have symptoms from the past that don't completely go away, or return but aren't 'new' so I don't alert my neurologist to them, as I'm not having a 'relapse' so to speak, or am I?

Why's this freaking disease have to be so utterly confusing anyways?!

Anyways, the question is: what differentiates RRMS v SPMS, or when does the neuro step up and hand out the SPMS reading? Can SPMS still have partial relapses, or does SPMS mean that your symptoms of your relapse all remain? See where I'm all confused? ;). I bet you do!

Hi DM! I didn't realize the subject was so confusing until you spelled it out!! LOL!! In my case the turning point was when the new and old symptoms of a relapse, never went away. Now I don't seem to have major exacerbations anymore, but at times I feel extra "carpy" -- weaker, more dizziness, nauseous, etc. My legs no longer work to walk, so I don't know if they're affected. I have a standing script with my neuro for Decadron pills if this happens and lasts too long. I'm allergic to solumedrol and my veins are shot for IV's -- hence the pills. Decadron is a steroid too. Anyway most of these symptoms are always here, but not as pronounced.

I have been taking LDN for a few years now and my neuro said they certainly must be helping as I should be in worse condition for the number of years I've had MS -- 19 diagnosed and probably 14 before that. For those who don't know "my story", I do use a powerchair all the time, but can stand for a couple minutes at the sink, transfer to regular chairs, toilet, and live alone. So even if you go SPMS, it doesn't necessarily mean it's all bad!! :)

Now you're probably REALLY confused!!!

Thanks for that positive note Judy.

i lose track of who feels what and at what stage they're at.

I too am absolutely confused by the whole category thing.

Try this one one for size...I was diagnosed last Halloween as RRMS. Flare up never went away. I had 2 months where all but one or two sx went away but those sx got worse every day until I woke up one morning back in full on attack mode.

Fortunately I happen to have the MRI happy neurologist. I have had 9 of those suckers in the last year. And every single one of them after the first set has shown new lesions, bigger lesions, and it has that dreaded P word all over it. She stopped telling me it was progressing and started using the it's progressive and rapidly progressive about 3 months ago. I keep asking what form of progressive I have and she still cannot tell me. So I am somewhere in progressive limbo land.

What I do know is the 4 lesions on my spine last october are now 13 (I think) and those original 4, the largest was 9mm are all now between 55 and 77.6mm. There is only a slight non effected area in my thoracic spine, my cervical is covered and every mri shows new ones. New ones are popping up in my brain too, but she is less concerned with those, and more concerned with keeping me walking.

So it's all very confusing!

Thank you Laura! I have scratched my head over this one as well. I hate this freaking disease! I just hate it! There are no black and white answers, and a truck load of maybes and a boat load of "well, ya see" type statements. Can I trade this disease in for one less confusing? :cool:

I don't have relapses anymore, but I know I'm getting worse, at least energy and fatigue-wise. My MRI's looked good last time, same with the cervical. Is this SPMS? Who knows. I'm physically strong because I make myself exercise, but I don't have the energy to do anything with that strength. :confused:

Good thread...I've been wondering about this myself...and I wonder if neuros really know:confused:
I guess it is good to keep a journal of the sxs, when they're stronger, when they're weaker, and let the dr. figure it out.
This is the wackiest disease I've ever heard of...

About 7yrs ago my knees started getting stiff-then my balance was off - these did not remit. I was dx 10/1988. I only had 1 MRI in 1988 and it was lost - next one was after stiff knees showing some brain lesions and 1 main one in the spine. I had no sx for 13 1/2yrs following dx-so original sx remitted for 13 1/2yrs (no meds) and then 7yrs ago put on baclofen. Neuros have not put a name on my ms but appears to be spms. Thank G-d progression has halted for me since being on Ty.

I think when you stop having pronounced remittances and remissions and a lot of your symptoms stay and perhaps worsen in severity, then you are crowned SPMS..:mad:

RRMS is remitt. followed by Remiss., where you heal and pretty much go back to normal mobility.

SPMS is only a progression of RRMS..

PPMS is when you start out with an attack that never really stops and you progress more rapidly.

RPMS is when you have remittances and remissions, but never completely heal, as you do in RR, and progress more rapidly..

The above are my words and not to be confused with anything scientific..;)

Great thread! Guess we all just have to live with this lousy disease no matter what name is put on it. As pud's friend said in her blog, "Live life to the full"......wherever that may fall within our abilities. :)