NOTE - March 16, 2011: Heads up - I just bumped this thread after being gone for several months. I’m back (hope I can stay for awhile) and the contest is still on! (See rules below.)
Really! I swear I'll send out prizes and everything!
Last week my body was hit (5th time in a little over a year) with an indescribable (but of course I'll describe it anyway) Adverse Event that is apparently nothing at all, but deserves a really creepy/important-sounding name. Actually, I have these little episodes all the time - surprise, short-lived, physical horrors (Instant Exacerbations??) that fit none of the official exacerbation criteria except for absurd horribleness.
Luckily (well, I think
that makes me lucky anyway), my MS is characterized more by quantity than severity of symptoms. They all need official names, especially when I have to add a long note about them in the margins of my daily Symptom Chart. Or when they become regular enough to merit a whole new column (one column is for "One Jolt Clonus" and another is "Itch & Twitch"). And here's where you can help me out – this symptom has finally become frequent enough to need an official column.
I've been pretty good at making up impressive sounding diagnoses for my ills in the past, but I'm swamped with work and other life crap and new, totally non-MS medical dx's that are limiting my time and imagination. I’ve even done research and can’t find much.
The Contest Rules: I'm making them up as I go along, so you can, too. I'll need assistance to judge the best or worst names, maybe the funniest (make me laugh – this is starting to piss me off), the most pseudoscientific, the most pretentious, the best acronym... As far as I'm concerned, you can report an event of your own and we'll help you name yours, too (or name it instead). I know! Maybe I can award a prize if your symptoms are judged to be even weirder
And we all get to whine a little (me first).
So here goes: (edited to add: Oops, I didn't mean to make it so long...)
Euphoniaa's As Yet Unnamed Symptom #1
So anyway, on Friday night I was awakened at 11:00 pm by another ungodly leg spasm unlike anything I've ever read about, MS or not. The first one (May 2009) was 10+ minutes of unbelievably painful spasms in my MS leg (pain rating 11 on a scale of 1-10) accompanied by my uncontrollable, guttural screaming/swearing and gasping for breath. The spasms come in increasingly painful waves, and subside a bit in between each one.
It starts with something similar to a teensy leg cramp like a typical charley horse, but as soon as I leap out of bed, it spreads from the outside of my calf, higher, lower, deeper, until it's deep inside, crushing my bones. It's kinda like robotic machine hands are twisting the hell out of my entire left leg, trying to rip it inside out. The thought that crosses my mind is: "MS meets HNPP (hereditary peripheral neuropathy)." Maybe instead of my nerves short circuiting and missing signals, now & then the many bare, demyelinated nerves of both my PNS/CNS make a perfect connection with each other and sparks fly. (Did I mention I have a vivid imagination?)
The other times the waves only made it to about a 7-9 on the scale, lasted 5-10 minutes, and then left. The 2nd time must have been quite a scene as I ripped open the velcro of my metal wrist braces so I could grab onto furniture and drag my way, screaming, to my cell phone across the room. All my clenched hands managed to do once I grabbed the phone was to press the photo button and take shaky pictures of my feet.
It's been the same scenario 5 times, always at night, in slightly different parts of my left leg, - including once when it only twisted the top of my foot. And then suddenly the pain is GONE. No after effects whatsoever (except for the 10 minutes it takes to get my breath back so I can finish crying/laughing hysterically with relief). No sore leg, even the next day – they don't seem to involve the muscles at all.
The most similar incident I can recall was 37 years ago when I literally had to be carried to the ER from work – the reason I date my MS that far back. Until it hit 5 times this last year, I had hoped it was an isolated incident and wouldn't return for another 37 years. Guess I'm not THAT lucky.
So, a name for it...I'm thinking this one's not "Chronic," but maybe something like... "Recurrent Osteosciatic Spasmodic Twisty Nerve Syndrome"
or something. Or would a term like Psychoneurotic
be more appropriate?
So the contest begins. I'm serious about offering prizes. And I'm serious about asking for funny. Sending pleasant, calming, pain-free wishes to all. And keep smiling.