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  • How is it working for you? Improvements? Arresting? Costs?

    It's doubtful that I could get it where I live.

    Thanks for the info, I didn't know it could be DIY
    I have been diagnosed with bulbar ALS. it has basically taken my voice since july, Then I got better and regained some of my voice. I have aggressively tried to slow the progression with diet, amino acids and DIY therapy.. which included me using MCI-186. Which in my opinion is fantastic.
    thanks for checking in
    Hello, Sorry I haven't gotten back to you but I wanted to wait and see how your symptoms, if any, have progressed.

    Feeling the same is better than worse- I never got twitches until after weakness and then after atrophy was noticeable. But, yes, if I'm overtired, anxious etc - I twitch like crazy. It was mostly in the same spot for about the first 8-12 months - but now it's pretty well indiscrimate. It's super noticeable - I've had comments made, more than once. So about that neuro - I agree some are better than others, but I doubt any are idiots. Sometimes people say that because the neuro has a crappy bedside manner, or is too quick. Try to have an open mind. I had knee surgery a few years ago - everyone I spoke to hated the surgeon. I had no problem whatsoever, he wasn't warm & fuzzy - that was fine, I was looking for a skilled surgeon, and that's what I got. So you never know. My swallow is ok. But I do have a weird tongue throat thing going on, which I'll see to at my next clinic later thus month. Hang in there Lee!
    I can only tell you how my symptoms were. My speech would get better and worse depending on time of day and emotional state.
    When I had a swallowing study performed in July of 2012, it showed good function.
    Besides speech issues, I had a problem moving food around in my mouth too.
    I wish I could be of more help but the best thing to do is wait for your EMG test results.
    Anything I tell you, in connection with my symptoms, will not help you to diagnose yourself.
    It sure sounds like thee is something going on with your tongue, but there are numerous other things that can affect both tongue movement and speech.
    Try to remain calm and positive.
    As far as your abilities to lift weights etc., that is a good sign!
    I do get a feeling like I need to clear my throat though.. right at the back of mouth..like I have postnasal drip.
    I wish the emg would come sooner. Living in a question mark is hell. All I want to know is what I am dealing with. It has been over 9 months now that my voice has been really bad and over a year since it was first noticed.
    Last couple months I think it has improved a bit.. but who knows. Thanks. Otherwise how is the rest of you doing?
    Gargling is okay...but trying to swish liquid in my mouth is painfully slow. I don't have the ball of phelm thing... I do have the feeling like I might have some nasal drip.. but this is from the weak nasal are(hence nasal sound). My voice is very dependent on stress level and as well if I talk for like an hour or 2 straight the tongue muscle will get tight on the left side.
    I have a throat/voice thing going on too - and it's fairly recent. Sometimes it's like there's a ball of phlegm stuck in deep my throat. So my voice seems to come in and out. The more tired I am, there harder it is to control slurring and to enunciate. If I'm really tired, I don't even try to talk. Voice at that point is deep and actually hurts my throat. I can no longer gargle. Can you? My swallow is normal.
    Anytime. My pleasure. No electric feeling in my tongue. It's just a weird sensation. Not numb, just clumsy. My swallow is great. Too great. I'm seeing my neuro tomorrow, so I'll ask him to check it. Could be more of a throat thing. This is all new to me too. I'm mostly left side affected.
    Take a look at my earlier posts and my blog. You might see some similarities which does NOT mean you have ALS, but surely some of the symptoms.
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