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    #16
    Where do you get these nuggets of wisdom from?

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      #17
      I can't believe so few of the medical professionals know so little of mnd if 1 in 300 suffer from it. How on earth does anyone stand a chance of diagnosis or treatment?

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        #18
        I pluck them from my grey matter. Cancer is the only game in town. 😉😁

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          #19
          Well, I had the RIG fitted yesterday so I’m feeling pretty sore today. Do people usually get some sedation for this procedure? I’m still in hospital with the NG tube still in. I’ve asked over and over why it’s not been taken out yet, but have had no clear answer. Has anyone else experienced this ? I can honestly say that no staff have been particularly understanding of MND. I’m on an acute admission ward due to bed problems, and nobody understands the RIG. I keep asking about what’s next ie dietitian, nutrition nurse etc and get strange looks from staff. This can’t be right. I’d value your thoughts. Lizzie🤔 x

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            #20
            Oh Lizzie, I was wondering about you, so good to hear that you had the procedure!

            No, sedation is not usually given for the RIG procedure, only sometimes.

            The NG tube is usually taken out after the procedure - it is used to put expand the stomach with air for the feeding tube placement - ask them why it's still in situ.

            Try getting hold of a Dietitian and if you're getting answers, contact PALS (Patient Liason Service)

            Good luck.

            Love Ellie.
            Last edited by Ellie; 22 September 2020, 12:29.
            ​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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              #21
              Thanks for your thoughts Ellie. To add insult to injury I’ve just been told that on discharge I have to isolate for 14 days as the woman in the opposite bed has tested positive for Covid. I feel for her but it’s also a bit worrying for other patients. 😫

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                #22
                Oh no. Stephen goes in for peg tomorrow. He not keen and worried sick. I hope things get better for you.
                xxxx

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                  #23
                  Don’t let it put him off. It will be helpful to get it done. I’m sure my experience wasn’t the norm. Hope it goes well. Love, Lizzie x

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                    #24
                    denise Hope all goes well for Stephen tomorrow - I think you could do with some of his sedation meds 😉

                    Will he stay in for a few days?

                    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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                      #25
                      Lizzie and Denise:

                      Good luck for a quick booking in Lizzie and I hope that it all goes easily with the happy pills that you mentioned.

                      Denise, I hope that Stephen’s appointment doesn’t get cancelled and everything goes smoothly. Shame about his fear but everyone says that it’s a doddle. Happy pills that Lizzie mentioned are the way to go.

                      I’ll be thinking about all of you, Lynne xx
                      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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                        #26
                        I could really do with those meds. We need to leave about 6am to arrive a bit early. He will be in for a couple of days. I get to drive home from coimbra and then back to the hospital next day. Really not keen on this but if he can get the peg fitted I can drive (I keep telling myself this 🤔) I hope it goes smoothly and he isn't in pain or I will never here the end of it. Suppose I could forget to pick him up

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                          #27
                          Fingers crossed all goes smoothly for you both

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                            #28
                            Seriously my PEG went in and stayed in without any serious pain. Use Aloe Vera on the site and the future is bright! 😊x


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                              #29
                              I got up 4.30ish. We had a bit of toast and tea because he will go on and on about wanting something to eat. Our original paperwork said nothing to eat for 3-4 hours before. But on reading the paperwork this was just for a camera. The doctor had explained the procedure and yes it was a camera and then coming through the stomach wall. Another letter came by post explaining the need for covid testing before the procedure on wednesday (no mention of no food) so he had covid test on Monday (6am start) so today we get there. I take him to the ward. I have to go. He can call me tomorrow to pick him up. I drive home (longest journey I have driven in 20 years). I'm tired and I send him a text that I'm home. He immediately calls to say it's been cancelled. I have to drive all the way back. It's because he had something to eat. They will send another letter and i suppose do the whole testing and procedure again. 😣

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                                #30
                                I had my peg fitted yesterday, have just arrived home along with 2 nippy’s and a cough assist.

                                The procedure seemed to be over in a couple of minutes.

                                I’m in some discomfort at moment, just waiting for the paracetamol to kick in. Hopefully the pains will ease in the next few days.
                                Sporadic MND/ALS - Limb onset - Diagnosed May 2016

                                Today is the tomorrow I feared yesterday

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