From onset I had episodes almost monthly (not very usual), now they've spread apart to be over 2 months (copaxone might be the reason for this). I've not been on it that long so I'm hoping of course they become less frequent.
Feel free to share, if you'd like how often yours have been.
I'm asking simply for all of us to see if we are very much alike in frequency or how vast the difference from one to another is.
p.s. The Institute I attended said that they believed these were not seperate attacks but that I'm in one large relapse with good days?...
This terminology doesn't work best for me , as on those attacks I do not leave home (usually), find trouble washing hair, fatigue takes over and my level of function is almost zip. Verses what I call my remissions (no matter how short and even if they do not fit criteria for remission) as then i have hardly no symptoms, can play basketball, shop, and just hop along like I'm a brand new person again.
So, with all that said, it's easier for me to refer to mine as I've mentioned above. It's the distinct difference of being functional or not.
ion the Institute gave you is more accurate than your interpretation. A new attack is when you have NEW symptoms, or tremendously worsened OLD symptoms, and the worsening and/or new symptoms last for 24 hours or more.
It's pretty usual early in a diagnosis for symptoms to come and go over hours, or overnight, and you experience several good days in a row...followed by days when you feel punky. Often what happens is on the days you feel GOOD, you overdo, work hard, play hard, do a lot of stuff..which is very wearing on a nervous system that is malfunctioning to begin with. So the next few days you find yourself way overtired, feeling unable to do much, feeling like punk. It's a matter of finding a balance so that when you DO have "good days" you get stuff done, but not "overdone", so you don't keep cycling in and out of being way overfatigued.
When I was first diagnosed, and for the first 12 years or so, I experienced on average 2-3 significant exacerbations a year. On a day to day basis, I had symptoms, and some days were much better than others. But when I had a true exacerbation -- things would happen that signifcantly impaired my ability to walk/toilet myself/ bathe myself/ feed myself -- those things that doctors call ADL, or "Activities of Daily Living". Occasionally (remember this was LONG ago before steroids and other treatments were done on an outpatient basis!) the exacerbation was severe enough that I'd be hospitalized.
Once I got on the Betaseron the major exacerbations ceased. I've been on Betaseron for 15 years now. I STILL have days when I have lots of energy, am able to do all sorts of things...and days when it's all I can do to get out of bed and feed the four furkids. But that's not at all the same as having an exacerbation.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....