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  1. LizF

    When simple stomach tube placement goes bad

    I'll keep this brief for those with reading challenges, feel free to ask questions in the comments if you like. I went into hospital on Dec 18 for a simple PEG placement. The doctor aborted the procedure as the light was not showing through my stomach, giving him a safe "landing site"...
  2. LizF

    PEG-potential downsides to early implementation?

    After quarterly spirography testing, my FVC has been 96% + since diagnosis in June 2016. However, my most recent test (last week) shows I have dropped to 71%. My respirologist is concerned, as that's one big drop, and has booked me for another test in December instead of waiting quarterly. He...
  3. LizF

    Wheelchair butt pain

    Well, I have discovered that the extra fat on my butt does not, in fact, make as good a cushion as I would expect! My career as a chef had me on my feet all the time, and I am really feeling the pain of being confined to a chair. I've changed cushions several times (currently using a ROHO which...
  4. LizF

    Weight, loss/gain

    I've always been overweight, and when I was dx with ALS I read that it was good to have a little extra on because I was likely to lose some as the disease progressed. I haven't lost any, actually, I've gained weight. I read recently that once your muscles have atrophied, the calories aren't...
  5. LizF

    Sudden loss of limb function, arms

    Hello, fellow pALS I have limb onset which claimed my legs first, which took a year. My arms just started to weaken last month. I feel pain, burning, fatigue, aching-nothing at all like it felt when my legs went. My legs just stopped working, no pain or discomfort at all. I feel as though...
  6. LizF

    Newly diagnosed, atypical presentation, looking for similar cases

    Hello, I was dx with ALS last week, after much testing and an earlier diagnosis of polymyositis. I have been told my case is atypical. My first symptom was leg weakness, which began in thighs before becoming distal, and with a dx of polymyositis had been on a run of Prednisone, on which I...
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