SPMS How/when do you know?
 

Hi everyone

This may sound like a really dumb question, but something I have often wondered about.

Is there a definitive sign that you have reached SPMS? Do you get lots more lesions, but no clear relapses - or is it a general decline - no lesions, no relapses, but lots more symptoms?

I don't have lots more lesions, but I am sure that my general capabilities and functions are on a (relatively slow) decline. I have been RRMS for 12 years now - and I may just be paranoid (but hey, that isn't a shooting offense with this stupid illness - I absolutely defy anyone to be totally calm).

My walking, weakness, vision, strength, memory, and fatigue just seem to be slowly drifting down down down.

So, do you have lots of definitive evidence in order to decide whether that progression is happening, or is it based on clinical findings?

Thanks and sorry to be a pain.

Lyn

I've wondered the same thing, Lynn. It seems like in the last year or two I've either worsened or I'm just more aware of my sx than I was before. I'd be interested to hear what others have to say.

Not Sure
 

I was already at the PPMS stage when I was diagnosed but I never had any symptoms that would come and go. My first sign was a slight drop foot which gradually progressed over the years as other symptoms developed such as leg weakness, memory lapses, falling, fatigue and sensitivity to heat. The progression was a slow with the drop foot in 1998 then leg weakness in 2000. To prevent falling I started using a cane in 2004.

My diagnosis was in Jan of 06 at that time I was still using a cane to help me get around. Since then I have had other medical issues that have affected my MS.

Not sure if this helps at all.

According to NMSS:

"The name for this disease course comes from the fact that it follows after the relapsing-remitting course. Of the 85% of people who are initially diagnosed with relapsing-remitting MS (RRMS), most will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without any relapses(also called attacks or exacerbations)."

From what I understand, many neuros are reluctant to say officially that someone is now SPMS mainly because (last I knew) having that diagnosis tanks the ability to stay on DMDs.

I've researched the transition from RRMS to SPMS a bit--I was diagnosed with RRMS over 7 years ago, with symptoms going back 12-13 years. I suspect I'm SPMS now, and I suspect that my neuro suspects that also, though he hasn't said it in so many words.

In my research, I notice that the descriptions of symptoms overlap quite a bit and are fairly subjective. An exacerbation, for example, can be new symptoms, or it can be a worsening of old symptoms. And then, of course, there are pseudo-exacerbations. I'm getting very gradually worse--no true exacerbation for years. But is that because I'm SPMS, or just because it's a long time between relapses?

I could be wrong (imagine that), but I think it's pretty arbitrary.

My Neuro told me that I was most likely SPMS, when I stopped having
regular exacerbations. I have been SPMS for about 15 years now
and started progressing slowly but surely, from that point.

10 years ago, when I started LDN, my progression stopped and I
plateaued and pretty much stayed the way I was 10 years ago. I
have had heat and stress caused mini flares from time to time, but
with no lasting damage.

SPMS is the natural slower progression of MS for most RRMS Peeps.:(

Putterfit!! :) So good to see you again. Where in the world have you been? We've missed you....

Thanks everyone

I am not sure I am much the wiser - sounds like a gradual slide - no fireworks to mark the 'new status'. No telegram from the Queen to say 'Congratulations' and no 'ticker tape' parades. :D

I have had so much residual stuff that has stayed with me since my original diagnosis - double vision, foot drop, issues with coordination and some with bladder control. It just makes me wonder these days, since I haven't had a relapse in years, but I fall more, and generally feel weaker on my left side, I am much more emotional (and unable to control it), and not coping near as well.

Thanks for the insight.

Hugs

That's one of the many things that stinks about this disease--nothing is for sure.

I don't understand how neurologists determine this either...

Ann, your emotional reactions could be pseudobulbar affect...there's a new med for it called Nudexta. It helps me somewhat...I saw an actual commercial about the disorder on TV last week.