This Is MS Multiple Sclerosis Community: Knowledge & Support

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 than mine...

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...)
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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.
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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 or Hypochondriatic 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.
-

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

P.S.
The link below is a good article about "Paroxysmal Symptoms of MS", and it explains a typical day in my MS life. My new symptom doesn't exactly fit in there either. It's close, though.
<shortened url>

P.P.S.
I also need a contingency plan if this finally hits while I'm at work (potential for public panic). I've made them promise not to call a squad until they've waited 10 minutes, but warned them it will probably scare them more than it does me. They're wondering how they'd explain why they're ignoring me to those who show up in the midst of such a scene.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

i'm game, my name for it is.. *drum roll please*

magnesium deficiency



MS and magnesium deficiency info (not everything but a great start):
http://www.nhfw.info/magnesium.html

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hmmm, well it didn't make me laugh out loud so you're not up for the big comedy prize... But maybe one of the prizes should go to anyone who comes up with a REAL solution. Now if I wasn't so medphobic AND supplementphobic we might be able to find out soon. I'm still dealing with my current reactions to Vit D & B12 right now (long story there), but I'll read your link.

Thanks!

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

not reallly trying to be funny, e

the most absorbable form of mag supplement - magnesium glycinate

best food sources of magnesium:

swiss chard (3 cups boiled per day) provides ~115% of daily needs
chard data link

spinach (3 cups boiled per day) provides ~120% of daily needs
spinach data link

pumpkin seeds (half a cup, raw) provides ~92% of daily needs
pumpkin seed link

these amounts should provide in the order of 200mg magnesium intake per day, satisfactory for a healthy person.

ms patients are advised to get extra - 500-600mg, 800mg, as much as 1000mg per day are some of the recommended dosages i have seen.

there are fish options out there but i don't think it's easy to get your hands on sustainable sources, and the amounts aren't that high.

http://www.seachoice.org/profile/40

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Okay Jimmy, I've read the info about magnesium (thank you) and I've gotta ask - what part of my description makes you think of magnesium deficiency?

I have very few of those symptoms overall, and have apparently spent the last year loading myself with magnesium rich foods, according to the lists. Which probably explains my lack of deficiency symptoms. I definitely don't have much problem with muscle cramps, and the little 'episodes' I described had nothing to do with my leg muscles whatsoever. That's what made the pain so strange.

Just woke up wondering.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

hi e, i was correlating this:
with this from the web site:
there is extensive research out there on muscle spasticity and magnesium.
you don't have to have every mag issue in the world, to have a mag problem. bloodwork can clarify. i never had a single muscle cramp but i did have spasticity/tension and scary throat issues. my lowest mag level in a test was .84 or something - but when i got it up to .91 my seemingly life-threatening dysphagia cleared up. and it came back when i stopped the mag supps to check. i eat a lot more greens now.

http://www.thisisms.com/ftopicp-56317.html#56317

so, if you want to be certain it's not mag, there's your test of choice. yes a swab is better test method but personally i was not able to get that done easily via my doc and the bloodwork was sufficient to point up the problem.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hi,

OK fatigue is hardly a peculiar MS symptom but I am fed up with people saying "Oh, I am tired too."

"Fatigue" doesn't really describe MS Fatigue at ALL.

So I have coined my own name for it. Sounds impressively medical and describes the complete incapacitation MUCH better.

Ready?





NEUROZOMBIOSIS

Hope you like it.

And then my latest symptom to hit me in this relapse is esophageal spasms which were so severe my Dr rang an ambulance and had me carted off to hospital as a suspected heart attack. TBH, I thought I was having a heart attack too.

So for this one I am calling it: "Pseudocardiac-elephantonchestitis"

Cheers,

Belinda[/b]

There you go - that's what I'm looking for. Thank you!

Been on an extended break. I'll be back soon.

E

P.S. I'll add these to my list of Top 100 Symptoms - have had them both.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

I dont know what causes these but I get them and I think they are the stomach pain radiating down to the legs. I cry the pain is so horrific. I beleive its the VAGUS nerve but the pain is derfered down to the legs. the reason I think this is cuz mine alternates between the "porphyria" stomach pain to may legs. percocet does not help BUT I had such a bad hangover form all the percs I was taking that I had to take an excedrin migrain and low and behold it took that monsterous pain away. I thought that maybe it was a coincidence but the pain came back later and I took it again and the damn asperin worked.

Sounds like flexor spasms to me.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

I agree with the whole magnesium thing for most cramps however
refractory hypokalemia is usually followed by a magnesium deficiency.
in other words low potassium caused by calcium overload in the cells. this type of hypokalemia (low potassium) can only be fixed by magnesium because if you try to replace the potassium with out it then you will raise a hormone called aldosterone and make the potassium dumping worse. magnesium is a natural calcium channel blocker. it will help that revolving door movement of potassium and sodium in and out of the cell. MS is much more than a neurological disorder.

agree. very true.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Brilliant - I hate the 'I get tired too'. I wonder if these people ever get so tired that they can't get out of their car and walk 10 feet to the front door?

Ouch at your night-time evilness. How about 'Nocturnal legagonosia'??

Am considering myself very lucky that most of my spasms are pretty painless & mostly irritating.

euphonia, i haven't come up with any new names for the misery, but i'm enjoying the fun! and jl, thanks many times over for sharing information. you are a precious asset to any conversation.