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Thread: Things are moving on..

  1. #1
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    Things are moving on..

    I was told I had MND by a registrar two months ago.. and then I was left. Iíve got myself referred to occupational therapist, neurophysio, gym referral and a consultant, Iím seeing him both privately and on the NHS. I chose him as his PHD and current work is with neuro muscular disorders. All my tests so far have sadly come back clear of any of the mnd mimics, but because it seems to get worse and then better thereís a slight sliver of hope itís not mnd and Iíll be around for my ten year old. Theyíve told me I no longer have an official diagnosis.has to be good right? Iím know thereís not much else it can be.. My G.P. has been amazing, really supportive.

    I have lower motor neurone signs I think, fasciculations, cramps, muscle wasting, weakness but brisk reflexes... My shoulder is affected now, so from left finger cramps to left shoulder affected 8 months. Still have a little use of my left hand, I can play video games even if I canít scratch my face properly! And bras are uncomfortable, who needs em

  2. #2
    Forum Member Terry's Avatar
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    Hi Catsparkle,

    I would not build up too much hope but there seems to be a slight chance that you may not have Mnd.

    The Meare fact that you had a working diagnosis of Mnd and not a firm one does leave a glimmer of hope.

    It might be Mnd related.

    Love Terry

  3. #3
    Hi Catsparkle bras yeah hella uncomfortable but worse without.

  4. #4
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    Thank you Terry xx I’m not holding out much hope, there’s a possibility it could be motor neuropathy (the consultant put that as a differential after my nerve conduction test) but you do wonder how much training the registrars get in talking to people. This one was saying it was good news my tests had come back negative, and of course it isn’t at all, those diseases are treatable.
    It’s starting to sink in with my partner- he’s in complete denial and furious if I can’t breathe well or my legs go wobbly.
    My legs seem to go jerky for a couple of days and then recover over another 3, had two bouts of this so far a few weeks apart. Is that normal?
    Broken nails, I’m on the stretchy sloggi ones at the mo so my daughter doesn’t have to do me up, but she says it was good practice for her first ones! I’m a d cup, so it’s definitely better with ��

  5. #5
    Catsparkle I am a G I don't think stretchy ones come in that size thankfully gossard has released a front fastening range as I can no longer do my bras up the way I did for 35yrs. I am cool with elastic waistbands already.

  6. #6
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    Thanks for the tip broken nails, I’ll have to look in to more types, I couldn’t do up the front fastening ones I had, although that could be because I didn’t have my glasses on ! (Sorry Terry )

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