diagnosis

  1. G

    Just some questions

    Hi everybody I was diagnosed with motor neuron disease about ten years ago, and since, I’ve been told I don’t have motor neuron disease, and I’ve also been told that I may have a neuropathy, or some form of limb girdle muscular dystrophy. I’ll try to make this pithy, but it’s a long story, if...
  2. O

    Advice on ALS Clinic Selection?

    Hello. My father was diagnosed w/ALS earlier this month at West Virginia University (WVU). The diagnosis and recommendation to begin Radicava was so swift from WVU that I suggested he get a 2nd opinion. We had the 2nd opinion at the Cleveland Clinic last week, and they want to re-run the EMG and...
  3. F

    Still not sure if it's ALS

    I have posted here before about my wife's condition. She has been in a wheel chair for over a year now and getting very weak. Recently she was hospitalized due to horrible stomach pains and constipation. I sent her to Lahey Clinic 3 times in a week by ambulance and they finally admitted her...
  4. S

    Moderate Dysphagia found in Swallow Study, plus tongue aches

    Hello all, thank you for your community. I have been seeking some form of diagnosis for a year or so now after beginning a variety of neuro type symptoms last Fall... which were initially numbness and tingling (I know, not ALS), which morphed into body wide twitches (worries began here)... which...
  5. S

    Is it ALS?

    Okay so I would like to start by stating that I am asking this for my mother who is 48 years old. Please excuse my grammatical errors as english is not my first language. It all started with TIA like symptoms. One day..out of nowhere my mother suddenly felt her left hand go numb...
  6. 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...
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