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    Sinking - got a lifeline?

    Tom as of yet you dont have the hallmark symptom of als wich is clinical distal weakness or bulbar involvment. These two fellows who label themselves doctors and who just infused the sums of all fears into you are irresponsible folks. I mean, a psychiatrist looking at fasciculatons and comming...
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    Brainstorm Nurown 'Right to Try' participant shares progress

    Because of regional issues I can't access this content. Can someone give me info about it? Is it ggod news? Thanks à lot!
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    Club membership at hand

    Hi Kevin. Let's do some basic physiology here. The eardrum muscle is not a voluntary muscle. You can't use it at will. It will respond to a sound that could impair your audition and close up the earcanal by sheer reflex. MND affects motoneurons, aka voluntary muscle function. I really don't get...
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    Feeling defeated

    I'm very very sorry you had to find us, and that you're in the dead zone right now where the diagnosis is still pending. It's probably the worst place to be. If it can help, just know you'll ajust to whatever outcome. Even if the dx is confirmed, and after a crazy emotional rollecoaster, you'll...
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    Atrophy + Twitches (UPDATE)

    Dear friend, thank you for the feedback. The waiting game is the worst. I'll advise you to try and relax until you hear back from the neurologist. Take it one day at the time, one hour at the time if needed. Focus on sport, outdoors, seeing friends and work. Give the twitching a shrug when you...
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    Questions about Symptoms/EMG

    Dad, you really have to let go. You don't have it, while members here who take the time to respond are struck with that plague or caregiver for people dying from it. Your age, your symptoms, and moreover your clean clinical exam AND clean EMG make you an ALS free person. If you're having...
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    Atrophy + Twitches (UPDATE)

    Hi there. Four limbs weakness (percieved) points away from MND. Twitches are irrelevant without the hallmark presentation that is real weakness. If the motoneuron unit feeding your thenar muscle wat dying off and the latter already presentating real atrophy your hand function would be badly...
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    Do you guys believe...

    Labs are in no hurry. There went frenzy for AIDS because as HIV began its war againt men, everyone and their uncle had a Black Death scenario fit and money was not the issue. Labs gathered their informations and States payed every mean and need for them to try and find a cure. ALS is not...
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    Do you guys believe...

    ...that one day doctors will ever say to a patient: "don't worry, it's only ALS". Or is this disease continue to plague and despair the human kind for hundreds of years to come?
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    Brainstorm Nurown 'Right to Try' participant shares progress

    Sadly it appears that this protocol, even if proven efficient, will not provide help for Pals already diagnosed. If I read it correctly, more than five years, at best, will come and go before any patient will get full access to the drug. How many of us here speaking will still be in the position...
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