Aaronmandevill
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  • Aaron, Don't hesitate to reach out to me for support. Thank you for your service. God bless, Kim
    Aaronmandevill
    Aaronmandevill
    Thanks so much Kim, you have been so helpful already. Are you located in the US?
    KimT
    KimT
    Daytona Beach Shores, Florida.
    Not sure how responses work here, but I responded to your question, brother.
    Aaronmandevill
    Aaronmandevill
    I can move them it’s just they are harder to move. I read bulbar can start with only difficulty swallowing and mine is getting much worse in what seems like a short time. Man I’m so scared right now since it’s like the worst version and I wanted to try and live as long as possible. I’m 36 years old
    HopefulMoogle
    HopefulMoogle
    If you can move them, that's good sign. It's not like they are in complete failure. What's odd to me is that you had the emg. I'd imagine that if your toes were due to ALS, the issue would have shown distally. I'd just have to think your toes are probably just stiff and so forth-- that's something common I see with the BFS forums.
    HopefulMoogle
    HopefulMoogle
    In terms of the swallowing, I also see that commonly on the bfs forums-- myself included. However, mine is more to do with gerd and so forth. But, with ALS, the swallowing thing has more to do with liquids is my understand and not solids.
    I don't know man, right now, I still think what you're going through sounds like bfs or the cfs variant.
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