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Stiffness in chest and hips

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  • Bern
    replied
    Thanks!

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  • MNDConnect
    replied
    You are very welcome Bern. That's all sorted for you and it should be with the GP in a couple of days

    Best Wishes

    Rachel

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  • Bern
    replied
    Thank you, Rachel. I've emailed with the relevant details.
    Bern

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  • MNDConnect
    replied
    Morning all

    As has been mentioned, we do produce a GP booklet aimed at teaching GPs about MND. If anyone would like a copy sending to their GP then please PM us or email us at [email protected] and we will arrange this.

    The booklets go out anonymously so they don't include any patient details. We would just need to know the name of the GP and the surgery details.

    Best Wishes

    Rachel

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  • Guest's Avatar
    Guest replied
    Hello Annb I remember my mam being moved by a carer and they wrenched her shoulder ,I panicked and said you've got to take her to the hospital ,when we arrived the doctor examined her !but unnervingly said there is nothing we can do for you ,again that was 20 years ago ,I honestly think they are just poking around in the dark.
    I think it's a postcode lottery, it depends on what postcode you are in -what help you get our local hospital is useless for diagnosis .
    We were never told anything about how my mams symptoms ,when we went to the RVI all They really did was weigh her and prescribed high calorie drinks.
    I think they were just using her as a guinea pig ,gathering information .
    Fortunately my mother was very intelligent so she diagnosed herself ,she probably knew exactly what her symptoms were but couldn't communicate it to me .
    If you can't manage the journey don't do it my mother tried , it was obvious it was just too much and we shouldn't have done it .
    Last edited by Streetwise; 15 October 2017, 14:32. Reason: iPad

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  • Terry
    replied
    Hi Annb;

    Sorry to hear that you don't have much contact with Mnd specialists and that you are down at the moment. It's fine to post your woes her and have a rant if you feel that way.

    I guess you have contact with the Mnda and I would be tempted to email Mnda connect and tell them of your situation and they might be able to sent an AV association visitor out to guide you.

    I don't know if you go to a hospice but they normally provide one day a week for a while and they are great places for help and info.

    Love Terry

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  • Annb
    replied
    My London Consultant told me that the average GP may see one MND sufferer in his career. Referrals to a Specialist seems to be up to the local Trust.

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  • Annb
    replied
    The MNDA sent my GP a pack. However, my GP seem to rely on the MD Team and letters sent to them from Consultants as to how to treat symptoms. This causes delays in getting a drug prescribed if at all.

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  • Annb
    replied
    I so agree about GPS having more training. I have a really great GP but I found him lacking in his knowledge of MND. I have been told this is because the illness is rare. Likewise The Consultants at my local hospital are generalists and they inspire me with confidence because they do not do what they say they will do. They offered beyond the MEG test which was done for an unrelated illness. I have referred myself to a London Hospital and that has proved a success as the Consultant is a specialist and can answer my questions. However the distanca away worries me. I am told that the local Multidisciplinary Team hold meeting to discuss MND sufferers but no-one ever examines me or asks me about new symptoms. I really do not know who the people in the MT are. I feel very alone at times. Other this forum Ihelps me to understand what symptoms are important and which to ignore. I feel I am deterationg but have no idea if I am. I live alone and find going out is becoming difficult as I am losing the use of my right hand/arm and my walking is difficult. Sorry if I feeling sorry for myself but am having a bad day.

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  • Guest's Avatar
    Guest replied
    Hello Bern ! My mams GP had seen three people in 30 years with motor neurone disease ,that was 20 years ago ,I don't know how it's changed -I'm in Sunderland Tyne and Wear, I don't know if that makes a difference !

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  • Bern
    replied
    Thanks Terry. That’s a great help.
    Bern x

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  • Terry
    replied
    Hi Bern;

    I think that the booklet is here and the Mnda can sent it:-
    https://www.mndassociation.org/wp-co...care-teams.pdf

    And there main page is here:-
    https://www.mndassociation.org/forprofessionals/

    And:-
    https://www.mndassociation.org/forpr...ation-for-gps/

    Love Terry

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  • Bern
    replied
    Hi Terry,
    Thanks. I'll take a look for info for GPs. Maybe I could take some leaflets into the surgery.
    Bern x

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  • Terry
    replied
    Hi Bern;

    I quite often take half mg of Lorazepan, it's more for anxiety if you have breathing problems but it does relax as well.

    Always be led by your specialist or maybe GP.

    There is quite a bit of information for GP's from the Mnda as well as a forum for professionals. There are some simple leaflets for them as well that you can get from the Mnda.

    Love Terry

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  • Bern
    replied
    Hi Rachel,
    Thank you. Seeing my GP is easier said than done. I'd have to ring on Monday, wait for a nurse to ring me back and then she decides if I need a GP appointment!
    Have had to beg for a flu jab.
    I think there should be some basic training for GPs about MND.
    Bern

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