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  • #129252
    CK Levels

    Hi ..

    My nephew has ck levels of 20000, getting another repeat next week..Doctors have said may need a biopsy and mri.. My sister is doing Dr. google and is extremely worried.
    He has all the signs and symptoms of Duchenne MD.. There are no family members going back five generations that have DMD or any other form of MD..

    Can anyone give us a little information on MD Please

    Thanks in advance

    pamela
    Participant
    Posts: 0
    Joined: 14/05/2016
    #129260
    Reply To: CK Levels

    Thanks for posting. Welcome to the forum.

    Sorry you have these worries.

    This is a very big question you are asking and diagnosis can be
    very complicated.

    We are told there are over sixty different firm of MD, so just looking
    at one or two factors might give you worry all for nothing. There
    are many forms of MD that are not so severe as Duchenne. The
    Biopsy and M.R.I. will give more information to help
    the professionals get closer to the truth.

    The one thing people say is that the backup and support for people
    with MD is first class these days and you will get the help
    you need.

    Keep asking questions. There are a network of regional advisorS too.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #129269
    Reply To: CK Levels

    Google is often the first place we turn to for information, it can be very useful but also provides all possibilities, so much information which can cause anxiety. As Taungfox says, there are many types of MD which have symptoms in common as well as subtle differences. On MDUK’s website there are fact sheets available on most types if and when you get a diagnosis. see here for info on muscle conditions

    Support is there should your nephew and family need it.

    Keep in touch and let us know if we can help or signpost you any further.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #149630
    Reply To: CK Levels

    Hi Pamela
    I’m new to this group and have just read your post from last year. I was wondering how your nephew is getting on.
    My son is 15 and has had high ck levels plus other symptoms of muscle disease since January. An awfully worrying time.
    Helen x

    Helen L
    Participant
    Posts: 0
    Joined: 17/05/2017
    #149635
    Reply To: CK Levels

    Welcome to the forum Pamela. I am sorry it is becasue you are so worried. Clearly it can be a very worrying time but try and ignore Dr google for now until such time as you have more specific information from the professionals. For example you can get loads of different weather predictions from the web, but it is the professionals who have the expertise and the skills to make a proper forecast. Yes I know from experience they get things wrong, as we all do. There are many self styled experts out there on the web who can post with little fear of recrimination. I am sure your local health team will do their utmaost to get to the bottom of all this for you, and should a variety of MD be diagnosed as Taungfox has said, there is an awful lot of support out there from real people to help you manage it.

    Mike

    So many love songs, so little love.

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