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Knyberg626

New member
Joined
Jul 27, 2016
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Reason
Loved one DX
Country
US
State
Minnesota
City
Duluth
Long story short my mother got diagnosed with bulbar onset ALS about a year ago, she's unfortunately steadily declining. I'm her care giver and it's heart wrenching to see my own mother go through something so unfair. As far as myself, I've had this twitching on the inside of my right foot (arch area) started one day and hasn't quit at all, it's spread a little and I have atrophy. Fast forward 5 months from when it started and now my right leg has this strange sensation in a few muscles, it's almost like a weak tickle my muscles are tight feeling around my big toe and where my foot is twitching, I also have tightness in my right thumb which led me to go to an neurologist, he performed a EMG and his diagnosis was cramping BFS. I should be happy, right? I'm not, it all keeps spreading and wasting, I almost feel like everyone took me as a joke because I'm only 26. I just wish the tight feeling, wasting and weakness would go away.
 
So, wanna trade? Can't walk, hands almost useless. I'll happily swap.

Go and thank god you have bfs and not als.
 
Sorry to hear about your mom, and please let her know about us if she doesn't. If you are having difficulty dealing with the diagnosis and caring for her, we have plenty of advice in the CALS subforums, and there are counselors who can help you. The social worker at your mom's ALS clinic or your own primary care doc may have a referral for you.

But to help both yourself and her, you need to let go of the idea that your muscles are "wasting." Hers are. Yours aren't.

Best,
Laurie
 
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