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    #16
    Hi Lynne,

    I hope you are feeling a bit better today.

    Hopefully, you will be able to get an emergency appointment with your GP (or possibly a telephone consultation with him/her, if you can't get an appointment straight away).

    Kayleigh x

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      #17
      Just reading this post has made me realise how lucky I am with my GP surgery. After my first visit with my rollator, my GP suggested that she phoned me every couple of months to see how I am and about every third or fourth month she visits me at home. I needed antibiotics recently and she made a home visit without me even asking. I have always had three monthly prescriptions for Riluzole which I order online andcan be collected from the surgery.
      The community matron visits every couple of months, takes my blood pressure and until recently was able to weigh me. She also gave me my flu jab.
      This is the level of care that we should all expect and receive.
      I am so sorry that things are so much more difficult than they should be for some of you.

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        #18
        Terry, Kayleigh, Miranda and Newbie 17. I just read all of your posts. Thank you all for replying. Terry I'm going to ring for an appointment at 8am tomorrow as that's the time that the phones are open. I am still coughing, tickly down the right hand side of my chest when I breath. My neurologist wrote to my previous GP to explain about MND, about me and asked him or rather told him to give me regular blood tests and a 3 month prescription for Riluzole every 3 months. He never remembered the blood tests but put my prescription on repeat which was good as made it much easier. The new GP won't put my prescription on repeat yet but when I see him, hopefully tomorrow I'll put that to him again, explaining that my previous doctor did and his practice is part of the same group of surgery's since 1st January 2019. So he could speak with my previous GP for information if he wanted to.

        Newbie17, you are certainly lucky with your GP. My new practice is very cramped. My husband pushing my wheelchair can just get me around. He catches the wheels, footrest and arms on things as we pass. The receptionist desk is high up and little space in front so I couldn't get further away to speak with her. She spoke with my husband, which annoyed me. Then I craned my neck to look up and she leaned over the desk. They all could do with training on how to respect disabled patients. It isn't my job to train them but it looks like that's the only way that I'll keep some independence and be respected.

        Take care all, 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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          #19
          Hi Lynne,

          So sorry you have a bad cough because you have enough to cope with and a cough is so tiring. It's so worrying that you have to argue to see your GP because antibiotics might really help you.. Like Newbie, it makes me realise how lucky I am with my GP. She regularly rings to see how I am and says just to call when I need anything even if it's for a chat. It's so unfair you don't get this service.

          It's a pet hate of mine when people speak to my husband instead of me because I am in a wheelchair. Grrr! He doesn't answer them but just looks at me.

          I really hope you feel better soon and get some meds to help your cough.

          Love Debbie x

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            #20
            Hi Lynne

            I hope you get an appointment tomorrow and that the doctor is helpful and understanding.
            Take care x

            Comment


              #21
              Thanks Newbie17 x
              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.

              Comment


                #22
                Thanks Debbie. X
                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.

                Comment


                  #23
                  hi lynne
                  hope you can book an appointment today
                  sorry to hear about all the problems you are having with the new surgery
                  is it worth gong back to your old doctor at minden ?
                  love
                  emma x

                  Comment


                    #24
                    I had an appointment. Met a lady doc for first time and very happy with her attitude. She took my blood pressure and oxygen level and was happy with both. Then she listened to my chest and asked some questions. She gave me steroids to open my airway (maybe the dry twiglets kicked off a bit of asthma. I had a few months of it in the mid ninetees and was then given an inhaler. But I sorted out my chest myself by avoiding all fumes. I told my smoking family members to take their cigs outside and for them to keep their bedroom doors shut and window open when they spray deodorant). These measures together with avoiding where I could avoiding car exhaust fumes sorted it out. But I have since been super careful about fumes of any kind. The doc asked me what my concern was about my cough. I told her that with MND and choking episodes there's a risk of developing bronchitis, but I don't think I'm there yet. But with three weeks having tickly tubes and a cough, especially troublesome when I breath deeply. She gave me some antibiotics and a card to take to our local hospital to get a chest x-ray. She said her advice is for any choking incident an x-ray is recommended to check for any foreign item lodged. I think that's overkill but will go Monday. My husband doesn't have time to take me today (in my wheelchair) and I cannot walk safely on ice or snow. Where we live gets more frost than lower down roads. 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.

                    Comment


                      #25
                      Hi Lynne,

                      It's good to hear that you had an appointment with your new GP today and that she was very thorough and helpful.

                      Hopefully the medication she has prescribed will help.

                      I hope you have a relaxing evening.

                      Kayleigh x

                      Comment


                        #26
                        I am glad you saw the GP Lynne.

                        I know it's a bit of a palaver to go and have an X-ray, but honestly, it's important to have it and rule out the slim possibility you have pneumonia.

                        I hope you can relax a bit now you've seen the GP, and have started treatment.

                        Stay safe and warm - is the new house cosy and easy to heat?

                        Love Ellie.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #27
                          Thanks Ellie. I don't have pneumonia but the doc wants to rule out if some food is stuck down there. Lynne x
                          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.

                          Comment


                            #28
                            Thanks Kayleigh. We are going to chill tonight and get a takeaway curry later. Lynne x
                            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.

                            Comment


                              #29
                              Hi Lynne,

                              I hope you are feeling more comforted now that your doctor has set in place a plan to identify what is the cause of your coughing. I hope all goes well next week.

                              Barry x
                              I’m going to do this even if it kills me!

                              Comment


                                #30
                                Thanks Barry. 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.

                                Comment

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