This is one of those times when I read something but still don't quite get it....(cog fog I guess and it's happening more and more ) Please bear with me.

None of my sx's have gone away (except ON but I still get the blurry vision, judging distance and trouble seeing at night) I can't remember a day in the last year that I have not had some kind of weird numbness, vertigo, pain, pin pricks, etc. I have days where I don't feel any sx's but they never fail to leave completely.

There have been a few times when a sx or two will be worse than before but nothing so drastic that I feel the need to call the neuro. I went through a few weeks where I fell several times when trying to stand. A couple new sx's have popped up as well, but I don't want to go the steroid route, at least not for now.

I too don't like the labels placed on MS, you either have it or you don't (IMO) but was told I'm RRMS. The problem I have with understanding RRMS (MS in general I suppose) is the flares, and the "remmission". If I continuously have sx's am I still considered in remmission? If the "old" sx's get worse is that a flare? And if new ones show up does that mean it's advancing to a different stage?

I hope this isn't too confusing, it's just that I could never figure all this out and sometimes the explanations don't quite make sense to me. lol

That's where I was confused too. How do you know when you're in remission if you're still having symptoms that are coming and going all the time?

I understand relapsing, that's where you get brand new stuff that lasts longer than a day (the way I see it, if it's a brand new neurological thing that you've never had before, and it lasts for more than a week, it's a relapse or some sort of flare)

If it's like the tingly arm that I had all morning that went away after I had lunch (hummus in pita bread and salt & vinegar potato chips...yum!) That's just some old damage or possibly a little bit of L'hermittes dropping by to remind me that I have MS, or I slept wrong.

If the RRMS acronym doesnt really go with what that stage of MS does, maybe they should change the name, or find a new acronym. Instead of Relapsing Remitting, maybe it should be called MS Lite, or Early MS or something other than what they have that makes people think that all the symptoms will go away until the next exacerbation.

Could you imagine the outrage if people called it, say, “mini-MS”?

A friend of mine, who has since passed (remember us talking about Grassman, Erin?) used to call it “baby-MS” (I think that was the term), and all he!! broke loose on the forum when he said that. Of course, to someone who had very progressive PPMS, that ultimately lead to his death in about 10 yrs, I'm sure he viewed what many of us with RRMS go through as a walk in the park.



I don’t know if you’ve ever shattered a bone, but sometimes it doesn’t heal properly. A joint close to it may never bend again, it may ache in the cold, the slightest amount of pressure can cause it to hurt, we may favor it and by doing so might causes muscle pain in our calf, etc. It is basically the same idea, but because it is nerves that are damaged, the result is more all-encompassing. We will “heal”, but we may continue to have symptoms based on certain triggers.

Cherie

If you do not have any new symptoms, and the old symptoms are not worse, you are considered to be in remission.

Your old symptoms, or residual symptoms left from previous exacerbations, can come and go. They do not have to be a constant all the time thing.

Most of mine are intermittent that way. Some days it is non-stop and others not at all. As long as whatever symptom appears is the same level of severity as it was previously, it is a part of your new normal.

If these things are come and go for you but suddenly stay for more than a day or so, you might be in a flare. Same for if it comes but is a lot worse than it usually is.

It is confusing, most consider remission to be back to normal. I did too, then thought WTF?!?

Unfortunately, MS remission only means the disease is not actively causing damage. We are still stuck with the permanent damage from previous relapses.

I've had several episodes of worsening of previous symptoms. One that I can trace directly to an infection from some dental work. I consider that a mini-flare from a fever/infection.

I've had another episode of optic neuritis, this time in the right eye that started in February, and was never more than just pain and a little bit of fuzzies in the eye. That only recently has gotten a little worse, actual blurriness in the eye.

I think I'm just annoyed at the fickleness of the MS...it make me think that it's backing off on me, and as soon as I expect it to leave me alone for a bit, it comes flying back in to torture me some more. It's just annoying as Heck.

Yes, it is. Just when you get used to dealing with one thing, it changes...

Infections, stress, irregular body temps, all those can cause psuedo-flares. Temporary worsening of symptoms that resolve after recovering from whatever triggered it basically.

I think that if the trigger is not removed, it will cause a full flare, or a full flare will develop if you do not allow yourself to recover from whatever triggered it...this is my own thought and not from any literature or doctor.

You know, that makes a lot of sense. My right foot (and then the left one) went numb after I had some dental work done in February/March. I know I still need more dental work done, but I'm trying to wait so that I can heal from the first round of dental work. (amalgam fillings were cracking my teeth, needed replacing with composite material)

I dont want to do the next set till late June. Then I have two more batches that will be done later this year. The worst was done in February, and the second worst is the one that will be done in June. I'm hoping that once the teeth that are set to be fixed in June get fixed that maybe some of the funky MS crap will let up on me.

Knocking on wood for that one.

I actually cant wait to get all the teeth fixed. Going to be getting some cosmetic stuff done after that. I'm all excited. I hate dentists, but I'm hoping the MS stuff will let up once all the big stuff is taken care of. I'm not going to count on it tho. At least I'll be rid of the amalgam fillings.

Actually, this is one reason why the phrase "RR" MS is so mis-leading. You can have active damage going on in your brain and not have a relapse, or even a psuedo exacerbation. You may very well be in remission and have damage going on. This is why the specialist stressed me going on meds now. Cause even though I had my onset attack, and 1 relapse since (8 years in between) there is more damage shown on my MRI than attributed to my onset and relapse. It may not be causing the inflamation that gives us a relapse, but damage is still occuring.

There are people with silent MS. They have it but it is never found until autopsy. They are basically in "remission" their entire life, but the disease is wrecking havoc on their brain.