I'm sure this has been covered by various threads/posts, but of course I can't remember...
Anyway, in RRMS, do your symptoms worsen over time-the ones that don't go away?
My toes going to sleep was the first really concrete neurological sign I had back in '05. Now they're all practically totally asleep, and never regain their sensation, where before I would feel them a bit more, then they'd go back to bed...
Just wondering...after all this time, I still don't understand various aspects of this stupid disease...

I have symptoms that came then went away forever (so far), symptoms that come and go (with fatigue? heat?), symptoms that stay and pretty much stay the same day after day, and symptoms that stay and very gradually, incrementally, become worse over time.

I haven't had any true "new" symptoms for maybe four years, and I suspect I am SPMS, though I try to hide my head in the sand about that one.

I had trigeminal neuralgia maybe 6 or 7 years ago. Lasted a few days, maybe two weeks, haven't seen it since (thank God). I had numbness in part of my face (around one side of lips, part of cheek and nose) also for a few days, and it has never come back.

The feeling of my left leg wearing support hose has been constant, never really better or worse.

I also suspect I'm SPMS although my Neuro hasn't officially said so. I think they're reluctant to use that term due to insurance companies denying meds for SPMS patients. It wouldn't matter for me since I'm not on any DMD.

The only sx that have stayed with me for years are balance issues, gait issues and the numbness in my right hand and arm.

I have other sx less frequently.....they come and go......but thankfully none have taken up residency yet.

It's different for almost everyone. Some of you sound like you are in the MSLITE faze of RRMS and some of sound as though you may be moving on to the SPMS stage.

I had MSLITE for years...thru my 30s and 40s, then the **** hit the fan at 52. Alot of STRESSSSS going on in my life, at that time and from there I had one exacerbation after another.

Avonex didn't stop them an neither did Copaxone,so I moved on to SPMS and here I am. The 1st sign I had that SPMS was upon me, was, that my symptoms seemed to stay and get a bit worse and even tho some symptoms improved, they wern't going away anymore.

I was hoping that the DMDs would slow or stop that progression, but, in most cases, that wasn't to be. I find that LDN helps my symptoms not to worsen and some even improved.

So, Debbie, yes your RR symptoms can worsen and stay and graduate to SP. I hope you find something, as I have, to slow that down.

Thanks for the input. The neuro said that I had one new lesion since the last MRI 19 mos. ago; he feels it's been there but showed up on the 3T machine he sends patients to...that really shows not much progression, in his opinion.

I don't understand the phases as I should...do you have a boatload of lesions when you have SPMS? Or do the lesions you have just calcify?
It's such a confusing disease...and the brain fog doesn't help much in understanding, either

Debbie,

You are not the only one that does not understand. I had my first (and only) major flare in March 2007. I was 50. I have permanent damage from that flare on my left side. That is why I need to use a cane. My rib cage on my left side always feels as though it is being squeezed. Sometimes the stiffness and spasticity is worse, but it is always there. I have other symptoms that come and go. When I was dx, I had 5 lesions. In the next year, I developed three more. I have not had any new lesions in past two years. My neuro thinks that I probably had ms for about ten years. My only symptoms were a partially numb foot and fatigue. Does this mean I am secondary progressive?

Barb,
You've got me...I don't know squat...funny, I've had tightness in my back around my lower rib cage since 2005...doc checked to make sure it wasn't my kidney...I think it's a permanent spasm. My massage therapist can't believe how tight it is, and can't get it out. So maybe it is permanent damage.
I'm glad this isn't cancer..but I wish I could understand it more...it seems to get more confusing to me as time passes. That could be my brain getting dumber, though