Recent content by Samkl

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    Awaiting diagnosis

    Has anyone heard of, or used a technique called breath stacking, and if yes, did you find it helpful to you in any way?
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    Awaiting diagnosis

    Yes, I believe so Laurie, given the EMG results. Sx
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    Awaiting diagnosis

    So ... yesterday my brother was in the middle of an IVIG session, when the respirologist who did the CPET on 11 November turned up (one month anniversary of the test!). My brother had been told by his MND doctor, an endocrinologist and the community nurse, that even though he should have heard...
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    Awaiting diagnosis

    So when, in the following, it says "clinical weakness, atrophy and upper motor signs", the atrophy follows clinical weakness, not that they occur together? Or that even if they are both present, the atrophy followed the clinical weakness? Symptoms The major initial symptoms of ALS are clinical...
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    Lost my Sharon.....😪

    Oh Dennis, I am so sorry for your loss...I wish there was something I could say to make any difference, but of course there's nothing I can say. Love, S xx
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    Awaiting diagnosis

    Apologies for the confusion re where I posted, Laurie and Karen.
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    Awaiting diagnosis

    He is undergoing an IVIG trial under the direction of his 2nd opinion doctor, who is the eminent head of an MND clinic at a major hospital. However, his original neurologist ruled on the basis of his EMG that he had "anterior horn cell disease" in a clinical context. I was under the impression...
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    My Wife Kathy is gone

    Dear Roger, Please accept my condolences on the loss of your beloved. I hope you are surrounded by support and love. S x
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    Awaiting diagnosis

    In my brother's latest round of appointments he has been told he has "widespread atrophy", but he has no muscle failure as yet. Are the terms "weight loss" and "atrophy" interchangeable in an ALS context? S x Mod note: That quote was taken from another thread. I have moved this post and the...
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    Awaiting diagnosis

    Pulmonary function test? Wow, what a steep learning curve this all is.😕 Now that you ask, I don’t know who he saw, I just assumed it was a specialist.
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    Awaiting diagnosis

    What is a PFT, Laurie?
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    Awaiting diagnosis

    He has seen the respiratory doctor who did the checks on the lungs and diaphragm, and said they were ok. They then sent him off to a heart doctor who did an echocardiogram, which showed no issue. At that point he went for the CPET, which is the result he’s been waiting for for 3 weeks. The...
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    Awaiting diagnosis

    Well, we’re still on the roller coaster. My brother is 5 and a half weeks in to his IVIG treatment, and he doesn’t feel a great deal has changed. He is maintaining his weight with a lot of harassment to eat from everybody, but he is thin. He mentioned to me that his hands symmetrically weaken...
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    Tom Hanks....

    Well, I'm in. My favourite Tom Hanks movie is a golden oldie - Big.
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    Bushfires in Oz

    Keep safe, anyone in a bushfire zone atm, especially you, Tillie. I hope your friends’ houses were spared! S xx
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