Question

[Jackjosh]

Are you really sure that you have the MS they say you have how do they know for sure what stage you are cuz I have aggressive MS and they say I have relapsing-remitting MS how do you know if you transfer to SPMS

[greaterexp]

That’s the $64K question. We can look up the definitions of both and think we know, but doctors can only do their best to interpret tests and symptoms.

[Jazzyinco]

You said it, I think Greater said it right too, def. The $64 K ?, whose nose!👃👃 any1's guess, they look @ our tests i guess, found out i was Progressed w/9 O.bands in CSF. WOW! Alot, could be JCVirus + too..😵 Blessings😻😸🐾---Jazzyinco

[tnolan2006]

You "transfer to SPMS" when your neurological reserve gets used up. You still have MS.

[kdali]

My understanding is that when you cross over, you stop having relapses/inflammatory events and decline as your reserve runs out, which could be fast or slow. I think I read that half of us never get there, but I don’t find that comforting. I’ve been told the reason some are still on drugs for RRMS but are considered to have SPMS is because most people don’t switch overnight and there’s still some inflammation that can be treated slowing progression/disability. Hindsight is how you know for sure 🤷‍♀️

[erash in reply to kdali]

You can still have relapses and inflammation in SPMS and PPMS but less frequent and the downward slope continues regardless due to less reserve and neuro degeneration (more black holes) ...at least that's my understanding.

[scooterjon58]

I'm no doctor. I knew that I had MS because I saw my brain MRI. In 1991 I started out walking and no problems. By 2011 I'd progressed so that now I'm PPMS. I was told that how you were after 5 years is the way you'd end up. After 5 years I was walking and talking just fine. Now, nothing works below my waist. I'm not sure what docs know anymore! Read my story on my blog at scooterjon58.com

[kdali in reply to scooterjon58]

Interesting about the 5 years, I have not heard that one yet. I wouldn’t know where to start counting 🤷‍♀️

[erash]

Check out Aaron Bosters YouTube on MS progression and the swimming pool model of MS. Good explanation of the continuum of progression. Essentially we r all in the same pool but some of us have pools that leak faster than others 😜

[kdali in reply to erash]

I loved his explanation!

[Diva1976]

It’s unfortunately that they can do nothing but go by your symptoms. Majority of everyone is diagnosed as RRMS. But you may find out different as time goes on. At least that is what happen to me. That’s where the confusion comes in at. As to say how was I at this stage, now at another stage. Bottom line is that it’s still MS and we hope to remain stable and not to get worse.

[kymrob91457]

Hi. My last exacerbation was in 2004, none since. But around 2008-2010 I was DX'd with SPMS. I guess if you have no relapses, but continue to decline, they change you from RR to SP. I was under the impression that people who have PPMS are DX with that right from the start. They miss the RR and the SP. That's how it was explained to me. Anyone else hear that??

[Jackjosh]

Thank you all for your feedback it really helps