Recent content by prattstar

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    Stopped rilutek bec of progression, notice difference?

    I read your post and froze. I was diagnosed a month earlier than your sister and have had some progression but in the scheme of things, it is not that significant. I feel for you, your sister and your families. I can't imagine for a moment how difficult it must be. I feel blessed that mine...
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    Hello and Back again

    Hi everyone, I have decided to return after taking a break from all thing ALS since being diagnosed in September last year. I felt I needed some time away to come to terms with my diagnosis and the impact it has had on my life. I have had another follow up with my neuro and have had some...
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    42 and newly diagnosed

    Hi there I am in a similar position to you. I received my MND diagnosis a three weeks prior to my 43rd birthday. I have a beautiful little 2 year old and a wife I love to bits. I received my diagnosis on 10 September so have had some time to think, adjust, think, reevaluate and basically...
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    Diagnosed with Benign MND

    Olly You are right about MND being the overarching diagnosis. I don't have a sub category and that doesn't seem to be a priority, so I found it very confusing when I first posted here as I didn't know that MND has different names in different countries. All I know is that I have an atypical...
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    Can EMGs be too early?

    MLane Waiting is by far the hardest part, until diagnosis that is, then your definition of hardness changes on a daily basis. Being scared of a potential diagnosis is understandable, I remember my past few months being full of fear and emotion. I only received my diagnosis on 10 September this...
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    At what point is a EMG to something?

    4 clean EMGs = happy days. And I agree you must believe so for now. I am not discounting your concerns. Clearly you have issues but rest assured ALS/MND is not one of them. Keep vigilant, if things change see your doctor but for now. Live your life. I wish you well Ian
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    Can EMGs be too early?

    I am not the EMG expert but I would have thought that it would show any changes potentially long before other symptoms develop, certainly in my case. I want to use an example I think has previously been used. Just because you have a clean EMG now, doesn't preclude you from developing ALS / MND...
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    Can EMGs be too early?

    Mlane There is another post here, that I have just responded to that addresses this to some degree. I have MND, my EMG showed abnormalities in January, before any other clinical signs of weakness (I still don't have clinical weakness on the score they used only last week). I am not a...
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    At what point is a EMG to something?

    None of mine were clean. They showed symptoms that were initially treated as something else. My neuro wasn't happy and said it may take sometime but She saw something in the beginning that the others didn't. I have to trust her. If you've had 4 clean emgs I would get some assistance with...
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    At what point is a EMG to something?

    I also have a well respected Professor of Neurology that knew something was wrong and relentlessly and persistently followed it up until she found an answer. It wasn't the answer I was looking for but I can't change it. I have to make Lots of happy memories for myself, my wife and importantly...
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    At what point is a EMG to something?

    I lost over 20kgs in weight, I had cramping in my muscles for 2 years, I have very visible twitching for 1 year. All other tests were negative (MRI, PET and CT scans, X-ray, lumbar puncture, blood tests) there wasn't anything else to try so did first emg in January, nothing much reported...
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    At what point is a EMG to something?

    Kittyangel. What on earth are you asking? How would we know if you have weakness or convulsions. I had an EMG that says I have MND, I have no clinical weakness, my clinical assessments are that of a relatively healthy 43 year old male. BUT my EMG indicates and the interpretation by an...
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    Update - as promised

    Luke, You are in my thoughts. Let's hope it is good news for you. Ian
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    Margaret, I don't know whether mine are upper, lower or both. I simply haven't asked as I...

    Margaret, I don't know whether mine are upper, lower or both. I simply haven't asked as I didn't think to. I am still coming to terms my diagnosis, I guess clarity will come with time. It seems that I am an atypical case as I have some symptoms but don't present with the usual raft of...
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    Thanks Margaret. I am fortunate enough to be under the medical supervision of professor Pamela...

    Thanks Margaret. I am fortunate enough to be under the medical supervision of professor Pamela Shaw at the Sheffield hallamshire. I am coming to terms with my diagnosis and living each day as positively as possible. Warm regards. Ian
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