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Don't know what to do???

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    Don't know what to do???

    Dear all.
    I've been to see neurologist and he said all my test was clear. Emg ncs his examination. He has put my symptoms down to aura head aches??? Which am not accepting. I've asked for 2nd opinion. With an mnd specialist which he did mention. I told him about my new symtoms am having problems. Am feeling like ive got lump in throat and my mouth is very dry. And now and then i get a think white colured saliva on the left side of my mouth. My wrist feel cramp and stiff both hands. And my shoulders and chest area feel heavy.. it last all day. And legs too. And diaphragm twicthes or spasms. Am in bed at the moment. Not feeling weak the twitches are all over my body some are very tiny I can't see them but feel them. I don't know where to turn I need help x

    #2
    Your post isn't clear to me - have you been referred for a 2nd opinion or not?
    ​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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      #3
      Yes he's sorting it out for me. It's another waiting game. Am just not well Elle. I spoke to connect yesterday and they gave me number to ring local support Hospital near me. I spoke to lovely lady who said she would look at my records and pass it on to her colleague doctor. I don't know what to do with myself. I feel really ill and weak. X

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        #4
        It would have been helpful if you included such pertinent information in your first post above.
        ​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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          #5
          Am so sorry. I didn't explain myself clearly Elle. 😥

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            #6
            Flowers, I wish you good luck for a second opinion. Maybe starting a daily diary of symptoms would help for your next appointment. Take care, Lynne
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
            I'm staying positive and taking each day as it comes.

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              #7
              Hi Lynne
              Thank you for your kind words. I really appreciate it. I have done and will continue to do so. I finding things difficult at the moment. I finding it hard to stay on my feet. My body feels so heavy. My legs too. I wish someone would listen to me.
              hope you are well. God bless you 😘x

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