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    C F S inquiry

    Hello all
    i Have been reading allot of posts. Thank you for the shared information
    I am interested if anyone on here has CFS. Cramp Fasciculation Syndrome ? The Severe rare from
    I have been dealing with this for a few years and it is becoming progressively worse. The last treatment was the plasma exchange. Which worked miracles. But is more likely I may have to do this again
    has anyone had this treatment
    thank you. T

    #2
    Hi. I thought CFS normally referred to Chronic Fatigue Syndrome, alternatively known as ME. In any case plasma exchange is one of the treatments for GBS/CIDP which my MND was originally diagnosed as. There is a Facebook group, but initially have a look here under plasmapheresis which is the same thing.

    https://gaincharity.org.uk/faq/faqs/

    Each day is made easier with a bit of humour.

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      #3
      tersmurf No sorry, I haven't come across anyone with cramp-fasciculation syndrome - it is very different to MNDs.

      I'm pretty sure you'll find a Forum for it, even if it's US-based.

      Best of luck to you.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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