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Thread: Diagnosed last week.

  1. #11
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    Thank you xxx My MRI and lumbar puncture have come back clear, still waiting on the ganglioside test and my spinal fluid protein was very slightly elevated so he’s trying more sensitive tests looking at auto immune diseases. Neurol registrar says MND is still the working diagnosis.
    My fasiculations have got a lot worse, think I’ve lost mass on my shoulder now (will check with physio on Monday) as well as hand and arm. Have felt destabilised walking and starting to feel loss of power in other hand. Am really hoping of course that this is all anxiety related, but I’ve been anxious for decades and not had this ��
    What do you all find helps with fasiculations? (Realising I’m fortunate to still have them)

  2. #12
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    Hi Catsparkle,
    I really hope they find something that is an autoimmune disease. The uncertainty is really hard although you seem to have a really positive attitude. I also hope you're getting lots of support . My muscle twitching seems to stop for a few days and start again.

    Take care of yourself.
    Love Debbie x

  3. #13
    Forum Member Ellie's Avatar
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    Hi Sparkle,

    Just wondering if you're being seen at a specialist MND Clinic?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #14
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    Hi Ellie x
    I looked up Southampton and I *think* it is, with links to Oxford. Ive got my GP (who is amazing) to refer me to a neuro-muscular disease consultant, he also runs MND outreach clinics.. I need to know more now, I've researched everything under the sun and understand that there is very little else it could be, have got a referral to occupational therapy as my left hand has lost a lot of function.. but I seem to relapse remit, which is the only thing that doesn't seem MND? Although I read someone on another thread who'd also regained some function. My MRI/lumbar are clear tho, so neuro registrar hasn't even mentioned MS, just MND.
    love Lisa

  5. #15
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    Thankyou Debbie xx Mine does too... so odd to see parts of you writhing around, my shoulder was like a bag of eels last week!

    love Lisa x

  6. #16
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    Thankyou Devonmaid, that's very kind of you x

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