Old 06-14-2009, 01:21 PM #31 (permalink)
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And, Beth, love the theme music!
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Old 06-14-2009, 01:25 PM #32 (permalink)
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Quote:
Originally Posted by whatsgoingon View Post
@JoelC: you wrote that twitching and cramps don't mean a thing but I've read a lot of posts here where pals say that were their first symptoms inculding you. I don't understand this
I never described twitching and cramps as my first symptoms. I have said that I have always had them but never attributed them to early signs of ALS!

Cramps and twitching are NOT an indication of ALS or anything else for that matter.
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Old 06-14-2009, 01:29 PM #33 (permalink)
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Caroline,

I second Beth! Great lyrics!

Beth,

Marvelous writing! I love the first peekaboos!


Icecreamlady,

In order to have a diagnosis of ALS, you must meet strict criteria. Upper and lower motor neuron death must be concluded. Upper motor neuron death is concluded by clinical observations while Lower motor neuron death is concluded by EMG and clinical findings (the latter being progressive muscle weakness and atrophy). Its not really that easy. A big, long list of other causes (some very simple) must be ruled out first.

PZ

Last edited by Zaphoon : 06-14-2009 at 01:32 PM Reason: added stuff
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Old 06-14-2009, 02:38 PM #34 (permalink)
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So.... we've got a smattering of attempts at serious questions mixed in with widespread mania

Nightwolf, I'm glad your twitches help you to get down and BOOGIE!

Icecreamlady,

I just don't have any useful advise other than to wait and see what develops. For comparison sake, one of my first symptoms was a weak and sometimes gravelly voice (mostly just weak) but my EMGs were diagnostic for ALS. However, at first my limb EMGs were fine, it only showed in the bulbar. I did have cramps, mostly legs, for a few months preceding the voice problems, and also some breathing changes. No twitching at all until a couple of months after my PBP diagnosis. I still don't twitch much, and it is mostly in my legs, although there are random ones in my arms... and abs..... back...butt.... face.... really though, not twitchy. I do have a completely absent gag reflex, and a good bit of problems with the entire swallow process. All I can think of to suggest, that you may not have had done, is an EMG of your vocal cord muscles. I think you should get more opinions, not because I secretly think you have ALS after all, but rather because you have physical changes that have not been accounted for, and its not good to just ignore bulbar area weakness. If you truly don't have a gag response, and you used to, then something is causing it.

Whatsgoingon,

When cramps are pathalogical, such as part of ALS, I thinkit is due to UMN problems, and the person's reflexes would be hyper, or at least brisk when the doctor tests them. I think we (many members of this forum) are trying to offset the vast amount of google generated fear incorrectly linking twitching and cramping to ALS as a primary cause. Many many MANY people twitch and get cramps, and they don't have, and won't have ALS. So, all of the other possible (probable) causes need to be explored. If your neuro exams continue to be normal, then that is as good a reason as any that whatever is behind your symptoms is not ALS. I CAN tell you, that regardless of their origin, and whether they are benign or malignant, that stress increases fasciculations. I don't know that stress has any affect on cramps.

...... now, about that soap opera

I think I need a cooler, more hip name, if Thelma gets to be a twin, then I think I should get to be named Ginger, or maybe Savannah, and I want to always have good hair days! As many assistants as it takes to maintain me ... and, it would be nice to have either Vittel or Evian spring water stocked in my dressing room. I'm cool with the garter belt idea. maybe I can find an interesting way to hook the garter straps to the tops of my AFOs.. better yet, just get some lace tops for the AFO's. That could be a nice look for actresses/nurses worldwide .... I'm all set to start memorizing my lines, or, I could just plug the script into my Model Talker, then people could actually hear what I say
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Old 06-14-2009, 03:34 PM #35 (permalink)
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Everyone on this thread is the funniest person ever! I am still laughing my twitching butt off!
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Old 06-14-2009, 03:45 PM #36 (permalink)
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thankyou beth and pz.
it needs some more work and a snappy tune to fit it to,maybe a rap.
part credits and any royalties go to pz for thinking of the title.

thelma, i think theres some liability and ftd involved in our madness..............well,thats my story and i'm sticking to it
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Old 06-14-2009, 04:06 PM #37 (permalink)
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Rose,
Ginger is good. Remember the TV show "Gilligan's Island"? Well, your avatar sort of looks like her, at least the hair. And, she was the movie star!

Garter belt attached to the AFO's could be an interesting look- wonder if I could get my husband to do that?!?

Olly,
It's definitely madness- don't know what caused it. Another thing we don't know the cause of.

Thelma,
Oh no! Now YOU'RE twitching?
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Old 06-14-2009, 04:13 PM #38 (permalink)
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Ok, so if Rose is Ginger, who is Mary-Anne. I want to be the Professor!
Hilarious thread guys, thanks for the laughs. My wife is giving me nasty looks as I promised to put up some shelves today but this is too much fun reading.
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Old 06-14-2009, 04:13 PM #39 (permalink)
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Now I've got this visual of a guy with suspenders (garters) attached to his afos, combined with the hairy legs

Caroline, how's the composition coming along?

I just saw that Wright posted on another thread. I think we need him to play the Hot Doctor, he and CJ can have a little something going on maybe...
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Old 06-14-2009, 04:26 PM #40 (permalink)
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I think we are all going to be accused of drinking when Al gets back and sees this thread!
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Old 06-14-2009, 04:29 PM #41 (permalink)
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Wait, maybe we make Al the captain; that leaves Gilligan and the elderly couple- what were their names?

(Barry, I'm Marianne-shhhhh!)
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Old 06-14-2009, 04:33 PM #42 (permalink)
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Mr and Mrs Howell
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Old 06-14-2009, 04:36 PM #43 (permalink)
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Yes, now who wants to be them?

We may have a spin-off series here!

Last edited by mare : 06-14-2009 at 04:48 PM Reason: just one more silly thought.
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Old 06-14-2009, 05:12 PM #44 (permalink)
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Barry, you kind of look like (how I remember) the professor looking in your latest avatar

... so maybe the hospital is on the site of what used to be Gilligan's Island, but now is a major research facility. The hospital does not get much clientele from the locals ~ as there are none ~ but twitchers are flown or floated in from the far corners of the world to be evaluated.

Caroline is almost like an element out of a James Bond flick though, you know, the evil mad doctor, wanting to carry out unsanctioned experiments far from the public eye.
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Old 06-14-2009, 05:26 PM #45 (permalink)
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I can't wait for the first episode. My muscles can't wait too. Only thinking on the theme song made my muscles "dance" again!
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