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  1. V

    You guys probably get this all the time...

    Thanks vicki, I shall of course post updates and float around DIHALS and the site generally - having been on the diagnostic journey myself, I might have something to offer by way of a calming influence on worriers.
  2. V

    You guys probably get this all the time...

    Well, have been scheduled in to meet onco next week. Looks like its radiation for dinner with a side order of chemo though we'll see. The emphasis from neuro was "I spoke to onco and its treatable" so that's something. Bottom line, IT - all if it - has a name, has a shape, has a location and...
  3. V

    You guys probably get this all the time...

    Its all back. Good news and not so good news. Good - it's not MND, it's neuromyotonia. Bad - the neuromyotonia is itself a symptom, confirmed by bloods and MRI, of prostate cancer which has spread to the bones of the spine and is compressing the cord, causing lower body symptoms. Upper body is...
  4. V

    hand/leg issues in 20 year old

    MND doesn't fluctuate. If you had it and you lost the use of a muscle, then that muscle isn't going to magically resurrect itself. The mind is a powerful thing, you've kind of grasped that yourself. Stress and worry can do MAJOR stuff to your body, without you even realising. Regarding...
  5. V

    You guys probably get this all the time...

    True Nikki, thanks for the good wishes.
  6. V

    You guys probably get this all the time...

    Cheers Nikki. I'm having symptoms and have ALS/MND in the family so, well, we'll see. Cheers for the response. Anyone else have any bells ringing?
  7. V

    You guys probably get this all the time...

    That was the NCS/EMG today then. NCS seemed normal. EMG on both legs at rest was sporadic popping noises with constant thudding sound underlying it, like a slightly fast heartbeat. On movement, turned into hail on a roof which took a few seconds to stop upon returning to rest. Upper body was...
  8. V

    You guys probably get this all the time...

    Thanks monster. Hope everything works out with you too. Any others have polyclonal or the toe thing?
  9. V

    You guys probably get this all the time...

    EMG/NCS in a week's time. MRI a few days ago, awaiting results. In meantime, bloods have thrown up Polyclonal Gammopathy; my liver's fine though, full blood count shows no reaction to infection, been through the list and I don't have lots of what's on there for obvious reasons (I'm not female...
  10. V

    You guys probably get this all the time...

    Nope, no cane as yet. No good ones for sale over here!
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