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Hello,my name is Belinda and my husband Ian was diagnosed 8 weeks ago

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Home Forums Newly diagnosed Hello,my name is Belinda and my husband Ian was diagnosed 8 weeks ago

This topic contains 7 replies, has 5 voices, and was last updated by Avatar patbb 10 months ago. This post has been viewed 1209 times

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #6875
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    tallulah
    Participant

    : Hello,my name is Belinda and my husband was diagnosed 8 weeks ago.I am not techno savi at all and even though I’ve read a lot of posts this is the first one I’ve managed to post(or not) !!!

    #6876
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    tallulah
    Participant

    When diagnosed the consultant said a Parkinson’s nurse would be in touch and we are still waiting ! I have learnt so much from this website and nothing from the NHS ! I feel very let down by them and worry that people who do not have access to the Internet will feel even worse.we have contacted social services as we will need help in the future,at the moment Ian can still drive and work(we are self employed hairdressers)but we fear he will have to give up soon as he is very slow and needs lots of rest between clients.His worse time is after our evening meal when he usually collapses as he did tonight and bloodied and bruised his arm .xxx

    #6878
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    janel
    Participant

    Hi Belinda – first thing to know: you are not alone. It’s a scary thing, the diagnosis, but I imagine you have been wondering what is going on for some time. Sometimes it is helpful to be able to name the beast.
    My advice would be to enjoy everything – go and do all the things that you ever wanted to do, no matter how trivial. We had great times on the Gower peninsula Easter 2015 and at La Rochelle September 2015.

    #6880
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    Forum Moderator
    Participant

    Hi Belinda,

    Welcome to the MSA forum. If you give us a ring we can send you our information and put you in touch with one of the nurse specialists.

    Kind regards,
    Samantha, MSAT NS.

    #6884
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    leo vogel
    Participant

    Hi Talluha, Hi Belinda,
    Welcome to this forum.
    One (of many) symptoms of MSA is Neurologic Orthostatic Hypotension. The Blood Pressure is managed in your brain and this centre could be damaged by MSA.
    During and after a meal your blood goes to your stomach and the BP drops, due to the NOH your brain does not get enough blood and you can go “out”.
    Tell your GP or neurologist about this, in MSA you have to teach the medical world.
    There is Northera (droxidopa) a good working medicine without side effects. BUT it is not available in europe.
    I got my insurance to pay for import from Japan. (I live in Holland and don’t know about the UK)
    Belinda ,please say hello to Ian and tell him he is not alone.
    And keep us posted.
    greetings, leo (diagnosed msa-p 2012)

    • This reply was modified 2 years, 11 months ago by Avatar leo vogel.
    #6893
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    tallulah
    Participant

    Thank you all for your advice ,I’m glad I have friends out there X

    #6900
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    janel
    Participant

    Hi Leo,
    As you say, Northera (droxidopa) is not licenced in the EU, but it is available in the UK. Lundbeck, the manufacturer, have a Managed Access Plan on a named-patient, compassionate use basis. Chris got it. Belinda and Ian should ask his neurologist about it.
    BW
    Jane

    #13573
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    patbb
    Participant

    Hi Belinda I am in the same stage with my husband and I have found it better to have small meals more often. Also he passes out on getting up, and have been giviving him suedoephedrine before he gets out of bed and this as stopped the morning issues. The neurologist has put him on a course of Ben-deloper and he feels a lot better. So it seems that they can try to treat a lot of symptoms when I thought we were so desperate. Talk to the neurologist and see what he can do for your problem. Best of luck it’s a lot to take in.
    Patxx

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