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Frieda

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    #31
    Thank you,. Terry. My limbs have suddenly become quite stiff, I have started with 5 mg, so far so good.

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      #32
      Hope it goes well for you this time Frieda - good luck!
      ​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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        #33
        Thank you so much, dear Ellie! Still good on day 2, so glad. Love, Frieda xox

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          #34
          Thanks for the update Frieda - onwards & upwards (hopefully!)
          ​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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            #35
            Hi, last night was my 3rd night with just 5 mg Baclofen. In the night I was very tired and was only half awake when using the commode, which was ok. But I am also dopey today and dozing, also ok. But my legs and left arm are so weak, can hardly stand and left hand not holding onto rails safely. Is this likely to get better as I adjusting to the tabs? Or is 5mg too high a dose? I only weigh 40 kg. Any idea? Sorry to go on about it. No diarrhea though, which is good. Love to you all, Frieda

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              #36
              I'm really worried about your weight Frieda - (not wanting to pry or lecture you) 40kg is very light and I doubt you're taking enough calories to give you enough energy to function, with or without the Baclofen. MND is a hungry disease which demands extra calories just for our bodies to function.

              To answer one question, the minimum recommended weight for a child to take Baclofen is 33kg, at a starting dose of 0.3mg/kg, divided into 4 doses.

              If you've lost weight due to MND, there are food supplements and getting a feeding tube to help increase your weight. Has this issue been raised before? (Obviously the GP is aware of your weight)

              You should talk to your GP or nurse about the suitability of continuing to use Baclofen.

              Sending you a big hug.

              Love Ellie.
              Last edited by Ellie; 19 November 2019, 15:19.
              ​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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                #37
                Freida, my neurologist told me that Baclofen makes muscles slack so if your legs and arms have deteriorated since taking it it's your decision whether or not to continue with it. You could find other possible solutions to cramps if you want to try going without to see if your legs and arms improve. 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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                  #38
                  Hi Frieda, I hope you are feeling better. My weight is low and it makes me very tired. Etc. I think I will be getting a feeding tube soon. I don't know nothing much about baclofen. Sorry, but lots of advice on here.
                  Sheila x

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                    #39
                    Hi Sheila, Lynne and Terry,
                    My energy is fine, I am eating loads.
                    Sent an email to mnd nurse asking for advice, not taking tablet tonight. Thanks for your helpful comments, you're stars! Love xox

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                      #40
                      I am getting a gadget to establish how much oxygen I get during the night. I assume that if it's not enough I may get an oxygen machine? In a leaflet from the mnd patient guide it says Oxygen therapy can have harmful effects on people with mnd worsening their condition. Any experience/ advice? Thanks, Frieda

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                        #41
                        Hello Frieda,

                        The type of ventilation that is usually provided for us is non-invasive ventilation (which is designed to assist breathing without it being dangerous for MND patients to use).

                        The ventilation machine increases airflow via a mask - as explained in the 4th dropdown ('are there different types of ventilation?') on the following webpage about Breathing and Ventilation:-

                        http://https://www.mndassociation.org/support-and-information/living-with-mnd/breathing-and-ventilation/

                        Love and best wishes,
                        Kayleigh x

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                          #42
                          Hi Frieda,

                          Non-invasive ventilation (BiPAP, Nippy) does not use oxygen, but ordinary air from the room.

                          There is also a good website all about NIV especially for people with MND, if you want to take a look: https://niv.mymnd.org.uk/

                          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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