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  1. R

    Recently diagnosed PLS

    Thank you, the sticky is really helpful and I understand now why he was saying this could still be ALS even though the EMG is clear. I really appreciate the offer of help with the NIV related queries, it's been a very lonely journey 🙏
  2. R

    Recently diagnosed PLS

    A few weeks ago I was diagnosed with PLS variant. I was anticipating some sort of serious diagnosis but these are still hard words to get your head around. I have had significant breathing trouble and was started on a ventilator some months ago. I've had 2 opinions now from very senior and well...
  3. R

    Hello and thank you

    Would I be out of order to ask questions about my NIV on here Nikki?
  4. R

    Hello and thank you

    A waiting game it still is then.
  5. R

    Hello and thank you

    so they tell me that als is still a differential? I thought that emg rules this out, I'm confused on the plus side, ive been using the machine for almost 2 weeks and Im no longer as breathless changing or walking...my sleep is still disturbed though and I still can't seem to sleep flat and am...
  6. R

    Hello and thank you

    I did have needles in legs and one arm so there still isn't a diagnosis 🙏 I'm going for the breathing machine fitting next week but there will be other tests to check my breathing muscles also- according to the pulmonologist. I can't remember if they mentioned the name of the machine I feel...
  7. R

    Hello and thank you

    I don't know what normal is anymore Nikki - to my mind its not normal that someone that has always tried to eat healthy, exercise, follow the 'right' advice and apart from having cancer is supposedly 'healthy' with every test 'normal' but can't do almost anything anymore Im sorry ... I have to...
  8. R

    Hello and thank you

    Hi Nikki The nerve study says no evidence of sensorimotor neuropathy, no significant myopathy or myositis and no myasthenia gravis The lung test said normal spirometry with reduced MIP, MEP and SNIP pressure, with significant decrease between sitting and supine capacity and normal blood gas...
  9. R

    Hello and thank you

    The EMG is in March, I had the PET 2 days ago so will hopefully get results soon. The other blood tests have come back normal, including the paraneoplastic screen and no evidence of current EBV or anything he said. He also ordered some lung function tests and some other breathing tests but I'm...
  10. R

    Hello and thank you

    I read in another post on here that someone was diagnosed based on the CST hyper intensity on MRI and tongue fasciculations with no EMG - is it true that this is enough for a diagnosis - This concerns me very much as this is exactly what the neurologist told me that he was worried about I...
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