So.... we've got a smattering of attempts at serious questions mixed in with widespread mania 8)
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