Viewing 6 posts - 1 through 6 (of 6 total)
  • #165268
    Likely muscular dystrophy ?

    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 testing 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
    #165277
    Reply To: Likely muscular dystrophy ?

    Hello and welcome. The first ting you must do is not panic or read into potential ‘symptoms’ of what might or might not be there. Your doctor’s approach is very sensible. High Ck levels are an indicator of possible mD but they can also indicate other things too. Spreading out the tests before the repeat makes sure and environmental influences have been removed. I know you are looking for quick answers here, but often quick result may not necessarily be the most accurate. Follow your doctor’s advice, but please do keep us informed.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #165278
    Reply To: Likely muscular dystrophy ?

    Thanks Mike for replying,
    I will definitely keep the group posted about further developments. I know what you are saying is very rationale but as a parent its difficult to stop thinking about it and stop reading the internet.
    Regards

    shahzadsherazi
    Participant
    Posts: 0
    Joined: 11/12/2018
    #165279
    Reply To: Likely muscular dystrophy ?

    It is indeed very hard. I have been there. I was only diagnoses after my son was. He was only diagnosed after a clued in consultant saw him on another matter and knew what he had. Even then it was six months before a DNA test result. Reading the internet can be dangerous at times. This is one of those times. I shall look forward to hearing from you soon. Remember you can just rant and vent if it helps. We all have done that on here from time to time.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #174965
    Reply To: Likely muscular dystrophy ?

    Hi Mike,
    Hope all is well.
    Just wanted to update that today we received the results for repeat CPK test. CPK value now has dropped to 637 compared to previous 933. I have shared the results with our doctor and she is saying that this is good news in way that CPK levels have not increased. She has postponed the muscle biopsy and instructed to repeat CPK in 3 months with a physical exam. Its little bit encouraging for us but i guess we still have to wait and see. I hope it is some viral thing that may go away with time.
    Regards,
    Shahzad

    shahzadsherazi
    Participant
    Posts: 0
    Joined: 11/12/2018
    #174971
    Reply To: Likely muscular dystrophy ?

    That is good news and your doctor is sensible to wait. Please do keep us informed of progress.

    Mike

    So many love songs, so little love.

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