CelineEs
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  • Thank you Wobblyheart.

    And you haven’t improved at all? Are you seeking some others opinions as well? I’m giving up. I’m to scared and symptoms just get worse. I had a life ahead of me. So many plans…… just can’t cope with this heath situation anymore.
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    CelineEs
    CelineEs
    Hi. It was rescheduled for Friday. Thanks fro asking.
    T
    Thundergun
    Let us know how it goes
    W
    Wobblyheart
    Hi @CelineEs how are you doing! I have just updated my post - whilst my condition is no better (but no worse either it seems), I now have trust in the doctors diagnosis and just decided to let my fears go and reevaluate in about 6 months time if there is need.
    Hi Celine, I am so sorry to see your new post. I am going through a very similar path and emphasise. I wish we could just be healthy. People dismissing you is horrendous. Don’t give up. Seek the third opinion
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    W
    Wobblyheart
    I sort of know that getting a diagnosis is not what we want but hoping it can at least bring some much needed help and support.
    W
    Wobblyheart
    I am seeing a local neuro next week and trying to make an appt with MND specialist in London.
    CelineEs
    CelineEs
    good luck with your appointment with MND Specialist. I hope neither of us have to receive, never, never that terrible diagnosis. Keep me posted and Good luck Again. I’m my case as you would have read, a regular Neuro and a Neoromuscular are saying no MND and I do want to believe that with 2 normal EGMS. But symptoms just get worse ! I don’t understand !!
    I lurk here sometimes since I was diagnosed with a thiamine deficiency, and I saw your posts. Hyperintensities in the supratentorial white matter on MRI is not unheard of with that condition. Shortness of breath while lying down is also common. Have you been eating well?

    I had a thiamine deficiency from a mix of alcohol overuse and anorexia. I'm doing better now.
    CelineEs
    CelineEs
    Hi ceedath. Thanks for your message. Was that your final diagnosis ? I am having trouble swallowing, so I have lost around 20 pounds. I never drink alcohol, always been healthy and all of the sudden this nightmare. I’m glad you are doing better. Thank you for getting in touch
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