Home > Topics > Muscular Dystrophy UK – General discussion boards > Newly diagnosed

Elevated CK and chances of MD

Viewing 6 posts - 1 through 6 (of 6 total)
  • November 27, 2015 at 2:15 am #118893
    Elevated CK and chances of MD

    Hi All,
    I am new to this group. My 3 year 10 months old child has elevated CK (50 times more than normar level) and has some symptoms of MD (difficult to climb stairs, etc.)
    I visted doctor and he said there are chances of MD. he ordered Genetic test.
    My family is very upset and test reports and results will be received in more than 3 months. When I called to doctor office they said it can’t be faster and report will be received after 3 or 4 months.
    I have following questions:

    1. High CK means always MD or there is possibility that elevated CK may be due to some other reasons?
    2. Does it take so long (3 to 4 months) for genetic test? if yes, then there is any way to get it done faster?
    3. Can some one suggest any prevention (exercise, massage, etc.) which I start right away instead of waiting for 3-4 months to get report and then start something.

    Doctor said that, dont change anything now in his lifestyle until we get reports and results. He prescribed vitamin D and Iron suppliments and one protein powder.
    Your quick responses are highly appreciated.
    Thanks

    jrc
    Participant
    Posts: 0
    Joined: 27/11/2015
    November 27, 2015 at 3:56 pm #118912
    Reply To: Elevated CK and chances of MD

    An elevated CK does not always mean for sure it is MD however it is a primary indicator. Sadly it does take that long for test results and some of us have taken years to get a specific correct diagnosis of which MD we have.

    Right now your GP is right, try your best to put it from your mind and enjoy the festive season. It is natural to worry and get caught up in google searches, cyber diagnosis and all the worst case scenarios, but it does not help.

    As for massage/exercise/physio, I’d suggest contacting your local physiotherapy department, they may be able to advise some light, low impact things to try.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    November 28, 2015 at 5:50 pm #118935
    Reply To: Elevated CK and chances of MD

    Thank you somuch AMGmod.
    I will visit local physiotherapy.
    I read it somewhere that swimming is good for muscle. What is you opinion?
    Can i take my child for swimming?
    What I do to make him strong while waiting for reports? Its big question.

    Thanks

    jrc
    Participant
    Posts: 0
    Joined: 27/11/2015
    November 28, 2015 at 7:03 pm #118940
    Reply To: Elevated CK and chances of MD

    Swimming is a great exercise, it is low impact and can be fun. Try not to get blinkered into making your lad ‘strong’ over working can be as dangerous as laziness.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    December 13, 2015 at 10:14 am #119392
    Reply To: Elevated CK and chances of MD

    There are other possibilities for a raised CK like that. One would be McArdle Disease, a metabolic myopathy. Look for the AGSD-UK web site, GSD Tyoe V is McArdle’s. On there is a page “Could me problems be due to McArdle Disease”. It perhaps won’t be easy to compare to your son at that age, but give it a try.

    Andrew Wakelin
    Participant
    Posts: 0
    Joined: 13/12/2015
    December 22, 2018 at 6:24 pm #165241
    Reply To: Elevated CK and chances of MD

    Dear Group Members,
    About a month back our family doctor in Pakistan during a visit to her noticed that my 4 years old boy was having some difficulty climbing up stairs. She requested CPK test and result showed CPK value of 933.
    She asked some further tests to do EMG/NCS, Thyroid profile, vitamin D3, Vit B12 and urine for metabolic studies. EMG result said suggestive of myopathy. Other tests came to be normal except B12 levels are higher(1474 pmol/l) and T3 is on upper threshold(2.7 nmol/l).
    There is no definite diagnosis by doctor and she says to repeat cpk levels in 3 months and may ask for biopsy. I think specific genetic test is not available in Pakistan. We are worried and hope its not some very dangerous type of MD like DMD. I have read around internet that DMD has extremely high CPK levels.
    Is there anything we can do meanwhile ? Please suggest
    Thanks

    shahzadsherazi
    Participant
    Posts: 0
    Joined: 11/12/2018
Viewing 6 posts - 1 through 6 (of 6 total)

You must be logged in to reply to this topic.

Keep in touch