Anybody Experienced with ALS?

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pzspencer

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i was just wondering if anyone knew anybody who has als? how did their twithching present? did they notice it for a while before the weakness kicked in or did they truly have marked weakness deficits before the fasics actually began?
 
amy, was her fasics in only the atrophied muscles? did she have fasics for a long time before her dx? did that actually precede her atrophy and weakness? thanks, joy
 
She did have some fasciculations, however I would say that the atrophy was right along with it. This atrophy was very noticable, there was no question about it. She also could not walk up the steps very early on. There wasn't a feeling of lead in her legs, her body would not do it. So, although she had fasciculations, they were accompanied by many other things that made her condition obvious.
She took part in some experimental drugs and experimental studies.
I almost hate to post her symptoms for fear of scaring anyone. Keep in mind that she had severe atrophy and weakness too.
I always say that I feel like I can't walk up the steps, but I can.
I feel like I can't lift my arms, but I can. This wasn't the case with her. It was not like she could push herself to do things, she just couldn't do it.
Amy
P.S. The fasciculations started out in her calf, which is where the atrophy started early on. However, she told me that she really does not feel any fasciculations anymore. So, I find peace in the fasciculations that I have, I'm glad they keep moving around, although I do have those "hot spots" that drive me crazy.
 
so she never had fasics all over before it settling in her calf?
any cramps or feeling of cramping in her legs early on?
thanks for all the input. joyce
 
Joyce, I can tell I freaked you out. I am going to PM you.
Believe me.....A** was obvious with her.
I almost hate to talk about her here, I responded to let you all know that if we had it, we would know.
Believe me, I still get freaked out. Honestly I do. I don't talk about it, I keep it to myself. However, I have to trust my doctors and believe I don't have it. Just like the rest of you do. Easier said than done huh?
Amy
 

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