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suebo

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Hello,
Does the twitching associated with ALS tend to jump around all over one's body? I am at my 7 month mark of twitching---no weakness. I twitch 24/7 in my feet and calves--throughout, and have a jump or several jumps in different spots throughout my entire body--arms, shoulder, thigh, eye, lip, rib,elbow, hand, etc. when ever I am relaxing--no two places twice. I really don't have much cramping--occassionally in my feet when I point my toes or do a lot of self checks(LOL) I think I have got so tuned into my body that I notice every little movement. I have read that this widespread of twitching without weakness and for this long is almost always benign, is this true? I had a neuro exam at 1 month of twitching-normal. He told me benign and no EMG necessary. I started noticing the twitches after I had a lip twitch and googled twitching--oh my!
 

guwainengle

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I am in your boat as far as twitches-- same story-- They say no but I wonder--It is happening alot more often and continuously. Good luck. As for a definate diagnosis-- I would go to an ALS certified center-- Hoe they can give you somthing to stop twitching-- Let me know what it is.

G
 

mamaoftwo

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I wanted to add something to this - I agree that without any atrophy or weakness, it is most likely benign but wanted to ask you, Annmarie about the focal fasics thing. I hadnt heard that focal fasics were more likely to be ALS and random ones more likely to be benign.
The only person I know personally who was diagnosed with ALS started with a twitch in his shoulder. Within a few weeks, he started having them all over, random ones like I have. One here, one there.
However, his first EMG was abnormal and immediately showed there was something wrong.
What I would suggest Sue is that if you are really worried, insist on an EMG. I was so scared when I had mine done that I had to take my dad and my husband with me! But you do need to go for your own peace of mind. Most likely you will be fine.
 

ltr

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Annmarie - we share the same heartache. My demise is so incredibly devastating in our situation. Two of my kids will go to live with their wealthy father in connecticut and my youngest son, only 9, will either end up with some dysfunctional family member or a foster home. Because of his adhd it will ruin his life. And, like you, I have spent every day with him. It has always been the two of us. When the other kids go away for a weekend or holiday vacation, my little one and I call it "just the two of us" and do special things. I have spent his life taking classes to learn about and handle his behaviors and how to give him the tools to make his life successful. I am afraid that will all be flushed. He has the potential of making it to a class 1 golf college and maybe more, but nobody else will help him the way I do. He will just be handled. What makes me so scared is the thought of any kind of physical, verbal or emotional abuse. These are reasons why we need diagnosis, so we can either end our worry or make real plans. Remember the posts about people dying with unfinished business? That will happen if I can't settle this. I didn't mean to make your post about me, but I understand and I want others to think about families like this and maybe offer some ideas or support.
 
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