Viewing 4 posts - 1 through 4 (of 4 total)
  • #202896
    PRIVATE TESTING ADVICE NEEDED

    Hey,
    My biological uncle has been diagnosed with muscular dystrophy. And it seems like getting tested is a struggle. My mum struggled initially, so I tried with the push that my husband will want kids soon – but got told my Mum needs to be tested first. In total it has taken us around 2 years to get to the point of my mum being 4 months in to a 12 month waiting list.
    I don’t suppose anyone has got tested privately at all please? If so, who did they use and how much was it please?
    Thank you in advance x

    MeganT89
    Participant
    Posts: 0
    Joined: 26/04/2023
    #202897
    Reply To: PRIVATE TESTING ADVICE NEEDED

    I am afraid I can’t help you, it was simply a creatine kinase test measured from a blood sample. Elevated levels of CK indicate muscle damage. I simply went to my GP to give a blood sample.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #202898
    Reply To: PRIVATE TESTING ADVICE NEEDED

    Hi megan,so what type of muscular dystrophy your uncle has and the fact that it may run in the family. So your mum would have a genetic test for the type of muscular dystrophy your uncle has.so i have a family history of the md that i have.but i was tested because of the symptoms I was having and the family history combined, so ask your family questions about any of the symptoms and the diagnosis they have if that’s not to awkward. Hope this helps. Ps. My diagnosis took about 4 months.

    Crazy cat
    Participant
    Posts: 0
    Joined: 27/01/2019
    #202899
    Reply To: PRIVATE TESTING ADVICE NEEDED

    It is not something I have come across myself, and I would imagine if you can organise it then it would be very expensive. A CrazyCat has said it very much depends on what condition you would want to test for. The waiting time seems horrendous, even in these days. Is it your GP that is telling you to wait? In essence it should be up to you and your medical advisers to make the decision, and in view of the possibility of children in the future it is something that you need to clarify as soon as you can. My own experience with GPs has been that they do not want to do testing if it can be avoided. My brother and father were both refused tests as the (different) GPs said they did not have MD and yet exhibited similar symptoms to me. I would suggest a neurologist might be the best person to ask, and perhaps an initial private appointment with hime or her might be a good step forward.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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