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Riluzole to Take or Not to take?

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    #46
    Originally posted by SallyAnnB View Post
    And when I was in hospital recently for my RIG, I asked for pain relief at one point and instead of giving me something via my cannula, the nurse brought me two paracetamol tablets and a cup of water and then kept asking me why I was slow in swallowing them.
    🙄 And your sole reason why you had to have a feeding tube in the first place was because you have trouble swallowing - talk about knowing your patients... 🤯

    I had similar issues with my pharmacist until my (browbeaten) husband went and spoke to the pharmacist and showed him the size of the hole on an extension tube, which attaches to my button feeding tube, explaining that everything which goes through my tube must pass freely through that tiny opening. Service improved markedly!! xx
    ​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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      #47
      Been back on 2 riluzole a day for a few weeks now - after a week or so, i had 3 days of stomach discomfort and not feeling well. However, i stuck with taking 2 and now have no issues with it.

      Bought some CBD oil, but discoveed that it conflicts with my anti-depressant! So, i've given up the CBD, for now.
      Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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        #48
        Good news re Riluzole Evelyn xx
        ​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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          #49
          Got my first 3 month supply of Riluzole delivered today😇 💥
          Tablets not liquid but as you said SallyAnnB they are small so fingers crossed. There's always yoghurt as Ellie suggested. Thanks for all the tips and advice folks....💟
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #50
            Wishing you well on Riluzole LindaB 🤞🤞😘
            ​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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              #51
              Originally posted by Ellie View Post
              Wishing you well on Riluzole LindaB 🤞🤞😘
              Thanks Ellie....hoping for no side effects or at least ones I can manage - fingers crossed.
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                #52
                Remember if you don’t swallow the tablet quickly, that is leaving it in your mouth for a few seconds, you end up with a tingly feeling. It’s normal and disappears after a few minutes.

                Richard
                Richard

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                  #53
                  Riluzole
                  ​Day one tablet one....swallowed ok....remembered all the tips...😇
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                    #54
                    Mind over matter, Linda! xx
                    ​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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                      #55
                      A new oral film now for riluzole. Should just melt on your tongue. Is it approved in UK?

                      https://www.exservan.com/


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                        #56
                        Sounds great Johnny. I haven’t heard of it being prescribed in the UK yet but may be in the pipeline. Fingers crossed. Lynne
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

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