When does the "remitting" part of "RRMS" start?
 

So, I've been diagnosed for a little over a year, and I'm curious...when does the remitting part start?

Cause I'm getting tired of feeling like crap most of the time, only occasionally having days where there isnt some annoying symptom bugging me constantly.

I've had days where a symptom didnt bug me much, but it was there, lurking...just reminding me that I've got MS. No matter what it is, a vision thing, a numb area, or some electric shock shocking me when I move my head.

When the hell does the remitting begin!?

sorry, this rant is being brought on by a burning foot that feels like it's got a sock made of Ben-Gay and capsaicin cream slathered all over it...oh, and a vision weirdness (blurred area in the focal point of my vision) that is driving me absolutely bananas!!!

I bought new glasses last week, and while I know that they were definately screwed up by the eyeglass place (EyeMasters) I'm pretty sure part of the problem was being caused by the vision BS that's going on right now. (EyeMasters twice screwed up the lenses by taking the measurements of my eyes wrong and put the focal points somewhere near my nose instead of where they should be)

I get new glasses (bought at my eye doctor's office) tomorrow. At least I'll get a free exam if the new lenses and my right eye dont get along.

I would love the remitting part of this to start right now, and last for at least the next 40 or 50yrs (I'll be 39 in 12 days...so if I could have it remit for 50 yrs then I wont really care if I have a relapse when I'm 90)

Erin, if you have seen improvements and symptoms have decreased in intensity and they are now coming and going and/or some symptoms are gone - that's remission.

Some have complete remissions (no symptoms in between relapses) but having residual symptoms is common.

This is from the National Multiple Sclerosis Society:

Going into remission doesn’t necessarily mean that the symptoms disappear totally—some people will return to feeling exactly as they did before the exacerbation began while others may find themselves left with some ongoing symptoms.
http://www.nationalmssociety.org/abo...ons/index.aspx

Erin, know how you feel sometimes. Totally understand the need to vent. :hug:

I have a lot of symptoms that have hung around after my flares. But since they are intermittent now instead of the constant that they were during the flare, my neuro considereds it in a "remit" stage.

I have had only one symptom totally go away, and that was tremors.


:hug:

It's different for everyone, Erin... When I was in the RR stage of MS, at first, I would go back to my 100% self, but with every flare, it would get a little worse and some SX would stick around and some would go.

Now that I have graduated to SPMS, the sx are all here to stay, but not as though i'm in a constant flare....just mild sx, but still there..:mad:

I don't seem to be gettin any worse, though...I hope it's the LDN..:)

:hug:

Erin - the specialist I saw yesterday said that he does not like the label Relapse-remit. He said it came, in the beginning, from the cancer era - like you can have a remission of the disease and then have it relapse. He said it gives false hope and doesnt fit this disease correctly.

He said even those who have a complete "remission" like me, it gives us false security, because the disease is still active and still destroying brain function, even if we can't see/feel/understand/find it. It also makes us feel that our disease may be more progressive if we don't "remit."

Of course he said it much clearer than I did. It makes sense... but doesn't make it easier.

I hope you feel better soon! Take advantage of the good days when you can. Wake up expecting a good day. If it turns out to be a bad day, pamper yourself. Sorry you are facing this.

:hug:

Everyone has given you great advice about the R/R aspects of this disease, but once you understand that, I think what is most important is to learn how to keep the effects/symptoms in perspective. If we do not learn to adapt to our current "norm", no matter how ugly or annoying it might be, then the stress of that is likely to cause even more symptoms. :cool:

I remember the days when my biggest obstacles were intermittent fatigue, pain, numbness, etc., but by that point I had already experienced a very gross paralysis attack. Every day I woke up and thanked GOD that those intermittent and relatively minor symptoms were all that remained from that relapse, and hoped that I never had to experience that again.

The next time :rolleyes:, I was again reasonably lucky with healing . . . and have fortunately continued to be "lucky" every time since as well. I have ongoing symptoms, to the point of being unemployable now, but they are seriously nothing like the way that I KNOW things CAN be.

You have to learn to go with the flow, Erin. You are still relatively new to this disease, and it is going to take time to adjust emotionally, but you do will have to do that eventually. That's almost the only 'control' we have.

Cherie

Darnit...I was hoping the remitting part meant that things would go away for a while...like before I started having the truly obvious MS stuff.

I do think I might be in a flare, or on the tail end of a flare. (the numb foot stuff, and some ON weirdness)

My right foot was totally numb for a month or more, and now it's not as numb, but it's burning and annoying, and feels like I've got Ben-Gay and capsaicin cream slathered all over it. It's annoying and I want all the numb and tingly crap to go away for awhile.

The vision stuff is annoying, but blurred vision isnt as bad as giant blind spots in the eyes, so it's easier to deal with sometimes, but when you have two or three things that constantly bug you, even if they're just residual symptoms, it seems to drive me nuts after awhile.

The only good thing about all this is that it's reminding me to keep stabbing myself with the needles (almost) every day.

Question s/s
 

What is s/s? the thing you say you can't stop blaming youtself for?

In my siggy, I have I CAN stop blaming myself for s/s. Like my fatigue. I used to think I was lazy and a bad housekeeper. I'd want to lie down and felt like I was bad for doing that all the time. There are some other things also, but that is the biggest thing. It feels good to have some validation to how I felt. I wasn't lazy, I wasn't not dependable...

I'm curious too... What exactly does the "s/s" mean, is it an abbreviation for two different words?

signs/symptoms - it is an abbreviation used in nursing... oops! DH yells at me when I use "nurse speak." Its kind like "internet speak." LOL

Ok, I understand this now. My dad is a nurse (CRNA actually...which is a Certified Registered Nurse Anesthetist) But, for some reason he hasnt used "nurse speak" around us much. But then, he's probably dumbing things down for me...even tho I've been taking classes for medical transcription.


I think I'll go back to feeling uncomfortably tingly and spinny now (please, tell the vertigo to stay away from me. It's icky) The spinnies could be being caused by hunger. I need food.

Hi Erin, I'm sorry you have been feeling all prickly and spinny :hug: You're off to eat and I think I'm off to a nap.

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


:grouphug:

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”? :p

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.