couldn't see a health page on this..what distinguishes one flare from the next?

[michelleislay]

hey guys,

to distinguish between one flare and another, do ALL symptoms need to disappear completely before any others return again?

one of my symptoms (the first one to have come) finally went away (hooray) awhile back and i'm hoping the others will follow suit in due time...but it seems something new keeps coming along every few weeks or so.  is this one normal sized "flare" of symptoms or would it be seen as "multiple" attacks?

...curious.

xo michelle

[michelleislay]

hmmm...thanks so much to steph, zacksmomi and sparkysarah for all chiming in.  

i was truly interested to hear that your course is similar steph, just one giant flare that keeps on morphing is what i think i could try and call what i have from what i have learned here.
it does make me wonder even if MRI's point towards ms, if i would even qualify as a dx yet, as this is my first flare.

zacksmomi, wow, i don't have much of a clue, but it was mentioned that the symptoms should be present for about 50% of the day, but i would imagine with spasms (barring that ms hug) that that rule may be a bit different.  also, your point about the solumedrol is valid...i would chat it over with your neuro for sure to try and clarify.  

sparkysarah, thanks so much for your sweet words.  they are very much appreciated!

xo to all, michelle

[Zacksmomi]

Ok now I this is one big can of worms isn't it???  I am gonna throw my fishing line in too if its ok.  
I am a bit confused about what it means that a sx has to last 24 hrs or more.  Two weeks ago I was having VERY painful bladder spasms for 3 days.  Now the spasms would come and go about 5-10 times a day, but I was not in spasm constantly for the entire day (thank goodness).
Is this still considered a flare sx?? This started right at the tail end of a sinus infection.

I also had worsening of the numbness in my hand that is still coming and going throughout the day.  My first flare, the numbness was constant and moved up my arm causing total inability to use my arm.  This time the permanent residual numbness in my finger has been spreading into my thumb and sometimes my entire hand and wrist.  There is no ryhme or reason to it, it is random throughout the day.

Now to consider this a flare sx, would my hand have to be constantly numb for 24 hrs or more? Is this more like little pseudo flares from some other outside factor??

UGH!!! I am pushing 2 years of this and I think I have been through a min of 8 flares and am no closer to figuring out any answers to what is what. I also wonder if solumedrol has given me a false sense of relief and maybe this last flare has been the same one since April.  

[steph74]

Michelle, my course seems to follow very much like yours.  New sx appearing every few weeks.  Eventually one may start to fade a little bit.  But for me, the general progression has been once a sx is here persistently (I've had some funky things come on briefly and leave, like changes in hearing, also I had the "hug" for several months, but it did eventually go away for the most part) they generally don't leave.  

[Sparkysarah]

I keep thinking I have "got it" and then start questioning again. I am going to see my neuro next week which will be a month before I hopefully start drug trial.

I need to have been as Quix stated in remission before I start again and am still a little unclear about this. Some of my symptoms from early relapses come and go on a regular basis...so my interpretation of this is that this is "my stable" as they have not got worse but at the same time have not gone away completely. I have never been symptom free from when I was first diagnosed in March...but have had 4 clear developments of new symptoms which so far my neuro says have been 4 distinct relapses. Confused?

I think it is going to take me longer than 6 months to work it all out and some things are not to be found in text books. Hang in there Michelle and stick to the positive good times as Lulu suggests.

Love Sarah x

[michelleislay]

also great advice lulu!  focusing on the good is a wonderful thing to do!!

xo michelle

[Lulu54]

Good for you if you got it, Michelle, because I still get very confused by this.  I've decided to stop thinking in terms of relapse and remission and just focus on the times I feel good.  LOL

most of the symptoms I have acquired don't go away - they just quiet down.

-Lulu

[michelleislay]

got it.  thanks a million!

michelle

[Quixotic1]

Not just symp[tom-free, but the symptoms can also be just "improved" or stable (not worsening).

Quix

[michelleislay]

ok, so that makes it pretty clear.  30 days in which a person is symptom free.  
and if i've interpreted correctly, during a flare, multiple symptoms can indeed keep presenting themselves, all to be considered part of the same flare.

thanks so much quix and willowwoman.  

xo michelle

[Quixotic1]

the key here is to realize that flares are separated by remissions.  So, you need to check the "definition" of a remission to understand when a new flare can start.

Basically - with a lot of gray area - here is what I wrote:

"A remission is a period of at least 30 days during which a person is symptom-free or symtom-improved during which the intensity of the symptoms that they do have is stable. They will not be acquiring new symptoms. The little variations of symptoms that are present (due to heat or fatigue, etc) are discussed above. The 30 days to define a remission cannot count begin immediately following a course of steroids.  The reason for this is that the steroids will calm the active inflammation of new lesions and may also calm the intensity of a person's symptoms.   The improvement after steroids could be called a False Remission.   The description is vague, because the length of time steroids may calm the inflammation of active demyelination can vary from person to person and from attack to attack.  This situation would need to be individually interpreted by the neurologist."

Quix

[willowwoman7]

I figured out I was in a flare when i could barely walk. Since I have had MS about 25-28 years, my neuro told me the damage I had was not going away. With that said, they told me a flare is when new symptoms appear, or in my case, when old symptoms become much worse. I knew I was in a flare because of the fact my legs didn't want to hold me, I was so exhausted all I wanted to do was sleep and an increase in muscle twitches, among others. After the soluMedrol by day 2 my legs were stronger.

[michelleislay]

thanks ess...

just caught your post now, must have been typing as you left it.

so, a common and elusive question, hey?  

that is wonderful to hear that you can heal even after things have been around for nearly a year!  the wonders of the human body...!

thanks so much for your input ladies!  i'll continue to ponder this one for quite sometime i suppose, as i'm learing we all do!  

good news, as i was typing the last response to jen, i got a phone call and the mri for my spine is booked for next wednesday!!  the head shortly thereafter on the 6th of sept!  woohoo!!   looks like medhelp has brought me not only knowledge but luck today!!  lol!!

cheers!

[michelleislay]

huh, interesting.
by this logic i almost want to say i've had three or four flares since june!?!

first big symptom, lt. side of body numb...about a week into that the tightness in same area.

about 3 wks after that, lt. thigh numb.

several weeks later again, dizziness/vertigo (which still remains to be determined if central or peripheral mind you)

several weeks later again, rt. side of body numb and intermittant tightness in lower ribs.

all of these symptoms have been solid each and every minute of the day, failing the first which started to fade about 2 wks ago and is now totally gone.

or could this all be part of the same flare?  of course, i may be pre-emptive in even referring to my symptoms as a flare...i am still undx., and i suppose there is the chance that this is the normal progression of something else entirely.

very MySterious indeed!!!  sorry if this is confusing...i sure am confusing myself!!~lol!

thanks so much jen, input much appreciated!!

xo michelle

[essdipity]

Jen's right, this is SO hard to understand, until it has cleared up and life goes on.

We have loads of discussions about the definition of a flare, but this remains as elusive as ever. It officially has to last 23-48 hours at minimum, but can be much longer than that. For me, it's been many months to nearly a year, and yet once I decide it's there forever, some symptoms have gradually disappeared. I must be one of those who manage to heal, if ever so slowly. Still, that's why I'm sure my MS remains in the RR category.

Keep on keepin' on. We're here to help.

ess

[jensequitur]

I think the reason there's no health page on it is that it's a very individual experience.  I have the same experience as you - I have new symptoms appear all the time.  But I really don't count it as a flare unless it's a new symptom that really is there all the time - like when the right side of my face felt cold for a month and a half.  

You know the basic rule - a symptom that lasts longer than 24 hours.  I don't know if it has to be a continuous 24 hours, but it should be there for at least 50% of that 24 hours.  (And that's just my rule of thumb - it's not an official criteria.)

And lots of times I don't know that I'm in a flare until I start feeling better, and realize that I can do something that I couldn't do last week.