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I’m in recovery!
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6 months ago my symptoms started. (Find my original symptoms in post history). I lost tons of weight due to fear and anxiety, I spent many nights planning my death, I cried for my partner and my children. It was hands down the worst time of my life. I saw another neurologist a few weeks ago who immediately knew what I was afraid of before I even said it. He saw videos of my twitching and had no concern. He gave me a full clinical exam which was completely normal. He did a very thorough EMG including my legs, arms, back, and neck and it came back perfect. He literally said “I promise you don’t have ALS right now.” He advised me to move on and accept having BFS. I still twitch mostly in my legs and tongue but I do not notice it anymore. It became easier to ignore and just accept as another weird thing about me. Moving forward, I plan to finish college and work in medicine. I am having surgery later this year to correct my severe scoliosis, which was put off when I started having fasciculations. For those of you who are new here and terrified, please please know that you are going to be okay. I know it seems like you won’t be, but please don’t let this fear control your life. I regret all that I’ve missed the past few months because I mentally wasn’t there; Halloween w my kids, Xmas, thanksgiving, and even my wedding in January. I am leaving this community now and I am grateful for the reassurance and support I received along the way. ❤️

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Profile updated: 4 days ago
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1 year ago