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    #16
    where can I get botox for reducing my tongue to enable me to eat please? GP refused me amitriptyline even though as a migraine sufferer for 50years i know it will be okay for me (lost 45lbs in 2 months still no SLT referral appointment )

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      #17
      Welcome to the Forum, Kara.

      Originally posted by Kara View Post
      where can I get botox for reducing my tongue to enable me to eat please?
      I'm a wee bit confused 🤔 Is your tongue swollen or in what way does it hinder eating?

      You are not the only one to have been denied Atropine, some Drs won't prescribe it, others will. Have you asked your Neurologist?

      I don't know which meds you've tried but there are several, as well as Botox, supplements and CBD Oil.

      Not everything works for everyone, so it's often a case of finding what works for you.

      Take care.

      Love Ellie.
      ​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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        #18
        They increased the dose to 2ml three times a day and getting much better

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          #19
          👍
          ​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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            #20
            Still drooling and spitting absolutely fed with it its a vicious cycle GP prescribed 2.5ml 3x a day hospice wives favourate 2ml a day she will not contact gp for me
            Last edited by jd58; 17 November 2020, 16:51.

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              #21
              I really should get shares in Kleenex seeing as how many tissues I get through in just one day.😉😃x

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                #22
                Originally posted by jd58 View Post
                Still drooling and spitting absolutely fed with it its a vicious cycle BP prescribed 2.5ml 3x a day hospice wives favourate 2ml a day she will not contact gp for me
                I don't really understand how the hospice nurse/doctor is overruling you - I know there is concern that it may impact other secretions, but surely it's *your* decision as to give it a try or not, then see how the higher doses go??

                The whole thing is clearly making you miserable and, if it's going to be an ongoing tug-of-war between you and the hospice, maybe think about having Botox treatment??

                I'm sorry you're having to go through this.

                Sending you a big hug.

                Love Ellie.
                ​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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                  #23
                  the thick mucus saliva for Jim is being treated with carbosystein after having tried hyocin (both) and others but he found tea (dehyrating) helped stop his bubbles and rather than dairy fortisip he is on fruit based - also perhaps try pineapple juice/ coconut oil? good luck

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                    #24
                    Thanks kara but I'm PEG feeding

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                      #25
                      Pineapple juice can go through the tube jd58 but its mechanism of action is to thin secretions so, in theory, it could make your drooling worse. It's really useful to take for thick, sticky mucus.
                      ​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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                        #26
                        I'm taking up with gp tomorrow

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                          #27
                          I cannot Swallow saliva too thin already

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                            #28
                            Ellie point noted thanks xxxx

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                              #29
                              Hospice doc at last has increased it to 2.5ml three times a day same as gp said months ago

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                                #30
                                Hope the higher dose has a positive effect - and there's still scope to increase it if necessary. x
                                ​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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