Am I missing something?

[supermum_ms]

Hi Guys and dolls,

Forgive me if this is a stupid Q but my brain keeps going back to it and i still cant work out the answer so it will make a little more sense. So i'm putting it out there, even if it is an unanswerable question. For the last what 7 years, my family and i can come up with 1 or 2 big episodes per year, significant enough that it takes me a few months to bounce back from, never quite the same but still enough of me to feel like me, if you get my meaning. Anyway, that all changed with the 2009 episode in April, it took until August before i felt like i had any control over what my body was doing, it was a doosey, bigger and meaner than ever before but long before August i could feel the little improvements happening.

What i'm getting at, is all the little episodes i dont count, i dont count them because it might be only a couple of weeks before i go back to the previous base line that the big episode left me at. I read the 24 or 48 hours of an increase in sx and i keep wondering if the little episodes i keep having are possibly not 'all' psuedo-episodes after all. I tend to try not to take much notice of the multitude of sensory sx i have, they are always there but its like background noises, and i only notice them (no longer ignore) when they ramp up in annoyance. We're at the tail end of a hot summer (oz) so getting too hot has been an issue but once i've cooled down and rested everything settles down so i'm counting those as psuedo-episodes.

The ones i'm wondering about just get worse once they start, everything seems to come back and just keeps getting bad, nothing i do seems to make a difference, cooling and sleeping do nothing, i'm on a down ward slide. The fatigue gets really bad, i cant even lift my head i'm so weak and floppy, sensory sx are all going off, balance, brain not working, communication limited, tremors etc. Though it only lasts around a week or so, i'm going down hill and takes about another week before i feel i've got back to baseline, i dont get to the really bad place i went during the 2009 big episode. When these happen its the fatigue i focus on, i know i'm off balance and not walking right, ugg the tremors but i tend to think thats all understandable due to the level of fatigue i'm dealing with, usually thinking its just bad fatigue.

The last one of these fatigue thingys, left behind an older sensory sx but its a little different, before it was like a little muscle tightening/twitch around the lower out side edge of my right eye (it not permanent), now when i close my left eye (only the left and doesnt happen if i close both) i get this feeling of static electricity in the same place, its new and yes i already know i'm weird lol! The fatigue thingy before that, left behind the vibration in a spot running down my left leg, below the knee, its a daily thing and i'm use to it now.

I had wondered if i was not counting the number of episodes i have correctly, due to the fact i only count the big ones but i think i might have that wrong, these fatigue thingys are not the same as the fatigue from over doing it or getting over heated, they last longer than 48 hours and cripple me.

Does that make any sense? Do they count or are they just bad fatigue and therefore psuedo-episodes?

Cheers.....JJ

[supermum_ms]

I'm not sure i agree with the premise that if your relapses are within 30 days they are not real, mainly because it sounds so scheduled and i dont see much regularity in this carp. Would that mean someone who has a major flare on the 28th day isn't really having a flare because there's still 2 days to go? doubt the 24 hours and 30 days are anything more than guidelines and shouldn't be taken overly literal, but hey who knows.

Even with the complication on psuedo's mucking me around, these really bad fatigue episodes i'm talking about, are definitely not regular or terribly predictable, though i can pin down an infection that has preceded the last 2, UTI & oral abscess. I have only had 2 of these since Christmas, my usual fatigue is up and down depending on what i try to do in any given day but these bad fatigue episodes i just know when i try to get up in the morning, i'm already totalled!

The cognitive issues i deal with do get worse with fatigue, no doubt i start dropping my words when ever i'm even slightly tired, but during these bad fatigue episodes it starts to get really loopy and I can't/dont talk or even think straight, not that i have the energy to waste anyway lol. I think you hit the nail on the head with the 'global' comment, thats spot on.

I dont know if i'm just trying to minimise this ?? journey, by only recognising the whoppers that throw me over the abiss, they tend to be hard to ignore but when it comes to all the other stuff that i just cant seem to get away from, it gets harder to work out. Maybe it doesn't even matter, another one of those things thats not that important anymore.

Cheers........JJ

[Quixotic1]

It makes total sense, but I don't really have an answer.  In the absolute sense of the definitions, if those little episodes are at least 30 days after the last one begins to improve, then they would count as real relapses.

If they are all pretty close together, then they are in a gray area and it would be up to your neuro to categorize them.  It seems like you assess the pseudo-exacerbations correctly.  They are more like exasperations.

If they are mostly changes in your global symptoms, like fatigue or cog symptoms, then I would say that it is your baseline which is pretty active up and down.  Within my understanding of the disease this makes the most sense.

quix

[supermum_ms]

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