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  • Hey mike, fasciculation1 mentioned you to me, so I just quickly read your story! Sorry you’re part of the club now!

    It sounds like you have had fairly fast atrophy over the last 2 months? Where in Australia are you? I’m in Melbourne, so I know who’s worth seeing here
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    Fasciculation1
    I love that comment from the doc. So, if I have twitching and atrophy that conveniently began at the same time, tell me what it is then, if it’s not a motor neuron disease. Most neuros I’ve found are just complete idiots.
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    Fasciculation1
    When I saw the neurosurgeon last year about my severely atrophied calf muscle. He said, you wouldn’t be twitching all over if this was a back issues. He said if it was a back issue causing this, you’d only be twitching in your calf. He straight up said, “this sounds like a motor neuron issue to me”. Then the neuro, when I told her that, said, “let’s not get ahead of ourselves”. Lol.
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    Arran
    Hey mike, how are things? I hope you have plenty of toilet paper lol! 0438770115 feel free to text me if this msg stays up long enough for you to get the number
    Hi Mike, I’m really sorry for what you’re going through. I’m almost in the same boat as you. Wide spread twitching and atrophy, with atrophy being mostly on my right side, from head to toe. This has been going on for 19 mos and I still don’t have answers. I’ve had several EMGs, with the two most recent showing a few areas of denervation, but not what’s usually
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    Fasciculation1
    trials in about 6 mos. I bought stock in the company it looks so good. I talked to a guy yesterday who’s in the trial and got his first stem cell injection last week. He said a good majority of his twitching has stopped. There’s a drug called cuatsm which is currently in trials there only in Australia and they say in the previous trial it slowed disease progression by about 70%.
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    Fasciculation1
    Lastly, there’s a procedure called TREGS here in the US that just started phase 2, but in phase 1, the procedure actually stopped the clinical progression of ALS for the first time in history. So, stay strong and keep up the good fight. Even if this is ALS and I continue to pray it’s not, there are some hopeful als treatments on the horizon for the first time ever in the history of man.
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    Fasciculation1
    Hey Mike, how you doing? Did you get any diagnostic clarity from the docs?
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