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  • Newbie17
    replied
    Hi Lynne

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

    Leave a comment:


  • Deb
    replied
    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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  • Lynne K
    replied
    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

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  • Newbie17
    replied
    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.

    Leave a comment:


  • Kayleigh
    replied
    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

    Leave a comment:


  • miranda
    replied
    I've just had to change my GPs practice because it's a nightmare a) to book a downstairs room and b) to get my wheelchair round the tight corners. Even had my flu jab n the waiting room! (It was empty).

    Leave a comment:


  • Terry
    replied
    Hi Lynne;

    I hope you are feeling better, a cough is very wearing.

    I'm impressed that they are supplying you with three months Riluzole, I think that most of us get it month to month.

    Doctor's appointments are quite often a problem, maybe they can put a note on your file allowing special booking of a appointment.

    My doctors only book appointments at 8:30 that morning. I am not out and moving before 10am and then need breakfast. They allowed me to book them a day in advance so I could plan and get there OK. I don't go there very often so I reckon that note has gone off my file now.

    But maybe you could try it and your specialist team might help with that to.

    Love Terry

    Leave a comment:


  • Lynne K
    replied
    Barry, my previous surgery was much better (Minden, Bury). This one is smaller (Spring Lane Surgery, Radcliffe) but better disabled parking and access to the alternative and bigger Radcliffe Health Centre. This one joined the same Tower Practices group that Minden and a surgery in Tottington joined. So they ought have all of my records quickly but they don't have them yet. Also they didn't do my Rilozone prescription despite having the request for a week. I was in for a blood test yesterday and expected my prescription to be waiting. I asked so the receptionist went up to speak with the senior doctor. He had my notes including a copy of my letter from my neurologist that explained about MND and about Rilozone. He brought a one month prescription down. I had to convince him to do three months. He was very reluctant to treat my prescription any different to his regular patients. His receptionist said that he can only give one month because he can monitor the tablets effects. She said he never gives more than one month. I reminded her and him that I see my neurologist every three months and she monitors me. I said that the doctors responsibility is to give me three months pills and a three monthly blood test. He caved eventually. I ought not have to argue my case with a doctor, nor receptionist/gate keeper. He obviously had not read any of the information that I'd sent to him. I hope that he gets better at this quickly. Lynne

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  • Barry52
    replied
    Hope you get it sorted Lynne as you must be worn out. Getting to see a doctor these days is such a challenge.

    Best wishes,
    Barry x

    Leave a comment:


  • Lynne K
    replied
    I'm going to ring my new doctor Friday morning for an emergency appointment. I've been looking online for an appointment and none have come up anywhere from now to end of February. I can't ring tomorrow because something getting done here tomorrow. I'm still coughing. Lynne

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  • Lynne K
    replied
    Thanks for the info John. I'm not at your stage yet. This is the first annoying cough due to nearly choking and bit of food down the airway. Hopefully my cough will clear on its own. Lynne

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  • JAY TEE
    replied
    Lynne, I formally diagnosed coming up 5yrs and had peg fitted two years ago but only use that few times a week as I can still eat well as long it’s minced up. My saliva very thick and drooling bad. I have patch behind ear and Carbocisteine 5ml three times a day an eye drops on tongue. I also in morning Lansoprazole tablet. I have a sucking machine which good to clear mouth and throat before eating. Also breath machine sending strong wind down throat so helps control the mouth and throat. Best wishes John

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  • Lynne K
    replied
    Hi Ellie. Thank you for your kind words. I've never eaten the culprit (twiglets) before as I feel that they're like cardboard. But I accepted a couple from my husband who was munching away on a big box of them. I'll never try them again. I'm still coughing, but it's slightly better each day. I tried to get a GP appointment online for this cough and my painful left wrist and hand, carpul tunnel syndrome, but no appointments were available. I've had this problem for years, well before MND. But had it confirmed with one of my nerve conduction studies. So I'm going to take the report to my new GP from that study where my carpul tunnel syndrome is mentioned. It's not bad today. But it was awful yesterday. Lynne

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  • Ellie
    replied
    Hi Lynne,

    I hope your breathing has improved again today and your secretions are back to clear colour (and you don't have a temperature?)

    Food going down the wrong way is scary for us because, as you rightly say, it's either very hard or impossible to give a decent cough to stop the offending item from going down the airway That can cause aspiration and lead to pneumonia, which none of us want!

    I wonder if you'd benefit from a Cough Assist machine? Although, from afar, it sounds as if your cough isn't bad, perhaps talk to your nurse about it.

    Wishing you well.

    Love Ellie.

    Leave a comment:


  • Lynne K
    replied
    Thanks Barry and Ellie. I can cough up mucus with lots of effort but getting it from my throat to a tissue is often impossible. However I've had some success yesterday and so far today. As I said yesterday I can pull a deep breath in more easily but I cannot hold it because it tickles and causes coughing. But I guess that this is my body trying to shift it. So more deep breathing planned. I hopefully can clear it this way. But as you say Barry if it's still a problem near to the end of this week I'll try to get a GP appointment. Lynne

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