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  • Hello Birmimat, again,

    The visitors messages have a 1,000 character limit, so I had to split mine. I wasn't quite finished with the first one.

    The more you read here, the more you learn, naturally. Another tip is to post your reply to a visitor message on their profile page, not your own.

    I'm sure Pandora will describe BFS (Benign Fasciculation Syndrome) for you, if she finds your post.

    Anyway, be patient. I know it's hard, but that's just the way it works. Make note of your questions for your Dr.s, and request records of the test results. Keep a file.

    Take time to read way back on the different threads that concern you. You'll find answers to a lot of your questions.......that have already been addressed long ago.

    Again, don't jump to conclusions, listen to the professionals. And do feel free to ask here if you have a need.
    Hello Birmimat,

    I see you learned your lesson about the long post. The second one was much better. You have to understand that a lot of the people here have great difficulty communicating, while dealing with this disease.

    Think carefully about what you want to say, make it concise, reread it before you hit the post button. Another good habit is doing like I'm doing here...a couple of lines, then skip to a new paragraph.

    Your symptoms don't sound like als to me. Maybe there are some Bulbar issues, however. The only way to know for sure is to have all the tests, basically ruling out everything else. I know this is a very frustrating process, but we all went through it.

    The emg seems to be the most definitive test, and even it depends on the progression of the disease at the time of the test, as well as the person doing the test. Insist on a neuro, don't settle for a tech.

    Good luck. Keep us informed.

    Hang tough
    Hi Pandora
    Thanks for the reply. Yeah, its seems like folks on here are pretty critical of things, but I guess I can understand if I was / am in their situation with such a horrible condition. What is BFS? How did you get diagnosed with that?
    Hi, I have BFS and have been having the same issue with swallowing as well as my palate blocking my nasopharynx at times when breathing out my nose. Not sure what it is either. I tried the forum and no one had patience for me either, so it might be best to find some ENT sites or something. The people here seem to not want to do anything but tell you you're obsessed and have anxiety.
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