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Thread: Hi everyone, i'm a new member

  1. #11
    daisy
    Guest
    Hi Ailsa from one new be to another!
    Sorry to hear about you recent diagnosis i am sure it was a huge shock! as many people have never heard of mnd or don't know much about it its a lot to take in. Your attitude is super and you little girl has one strong mum keep your chin up and positive thinking.

    XXxxx

  2. #12
    Forum Member
    Join Date
    Aug 2013
    Location
    Manchester
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    Thank you John,

    I will ask the doctor when I finally get another appointment! I haven't really spoken to anybody since i got diagnosed a month ago, is this normal?
    Also I should of had lumber puncture that they said was pretty much optional to test my potassium levels and I kind of got the impression that it was to cover themselves and to dot the I's and cross the T's. I am petrified of needles so, like a child I opted out. The neurologist who diagnosed then called up and spoke to my mum and has referred me to the MND doctor who insists that I go for this lumbar puncture and repeat a few more tests as I am so young.to rule anything else out. At the time of diagnosis though they said it was a 100% ALS. I'm confused and also this has now given my mum and other family members hope. I on the other hand feel as if it's false hope and just as it is sinking in with my family feel like they will be crushed all over again.
    Any advice?

    Ailsa xx

  3. #13
    Forum Member
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    Aug 2013
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    Manchester
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    11
    Thank you Daisy,

    I hope your dad gets some of your strength. I lost my dad this year ,not through MND but through alcohol related issues so I understand how frustrating it is when they don't listen and won't be helped

    Ailsa xx

  4. #14
    Forum Member john's Avatar
    Join Date
    Sep 2011
    Location
    Leyburn , North yorks.
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    2,236
    Hi Ailsa,

    It has got to be a no brainer. If you test and it shows nothing else then you are just where you are but if you test and it shows a treatable condition you can break out the champagne. Really nothing to lose and everything to gain.
    I am not sure about the fear of needles . I haven't met anyone who likes needles but it seems like a small price to pay.
    Go for it.

    John

  5. #15
    Forum Member
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    Manchester
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    I know I am going to have them done, just thought they would have done all the tests before diagnosing me rather than the other way round? Suppose i'm just confused.

    xx

  6. #16
    Forum Member Frank's Avatar
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    Jan 2013
    Location
    Brighouse, West Yorkshire
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    140
    I thought the same as you when diagnosed before the tests. I am 47 and hoped I was too young.
    But there are certain things that when crop up all together, normally mean MND.
    Muscle wasting, tremors to the arms and legs, jittery sides of the tongue and speach / swallowing issues. If you have most of these, and a clean MRI scan, the specialist can be quite certain.
    But with you being young, it could hopfully be several others things, that you have got all at once.
    Have the test ASAP. It takes half an hour. Yes, it hurts, not too much, but certainly uncomfortable; but if it comes back as not MND, think how chuffed you will be.
    Good luck, my fingers are crossed for you, your daughter and family.
    xxFrank.
    'An eye for an eye', leaves the whole world blind.

  7. #17
    Forum Member Laila's Avatar
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    Feb 2013
    Location
    Aberdeenshire
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    439
    Hi Ailsa,

    With frank on that.

    I had a lumbar puncture done and it wasn't bad at all. It's to check the cerebrospinal fluid, to help diagnosis of what the disease actually is.

    Good luck, Carol

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