Viewing 5 posts - 1 through 5 (of 5 total)
  • #175222
    Help :(

    Hi everyone, I would just like to seek advice. My nephew, 5 years old was initially diagnosed with DMD. We, especially me was really devastated as I am like there second mother. He will be having a second opinion tomorrow. Based on the information I’ve researched inglogle, he is showing all the symptoms except for very large calf and delays on his milestones while growing up. It started when he got a flu a month ago. After that flu he cant really walk, walking hurts him he said. Then everyday, his situation gets better. He can barely walk now but still cant run. Sometimes he can climb stairs. He doesnt have any respiratory problems. By the way, I am from the Philippines. Also, is the excessive sweating of his hands and feet have connections with this? Thank you. I dont know how to deal with this, my family didnt know about this disorder until today. Feels like I’ll be losing my mind crying and thinking :(

    Jill
    Participant
    Posts: 0
    Joined: 06/02/2019
    #175236
    Reply To: Help :(

    Hello and welcome Jill. We are glad to have you onboard. I wold caution you about Mr Google searches as they can often be very misleading if you do not have the requisite medical knowledge. You have already been given a DMD diagnosis and it is gratifying that your medical professional has arranged for a second opinion. Once the diagnosis is completely clarified then you can begin to make plans, together with the medical professionals advising you. The important thing at this point is to ensure that you do not overthink things. I wou, and also look through the pages of the MDUK website so that you can begin to find out what really is in store and what help you can get.ld also suggest that you begin to research local support groups. It is not the end of the world if the diagnosis is confirmed, it is though, a beginning of another journey that was not expected. Please do keep us informed.

    Mike

    SO many love songs, so little love.

    embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #175238
    Reply To: Help :(

    The initial impression was only based on the physical test. Do you think results can be negative? My nephew is improving everyday. This is really hard. We have to wait for months before we see the results. Blood samples will be sent out to US for testing. This is really hard.

    Jill
    Participant
    Posts: 0
    Joined: 06/02/2019
    #175418
    Reply To: Help :(

    So my nephew’s CPK test turns out normal so we are very happy and very thankful! His doctor now suspects Spinal Muscle Atrophy which we are not familiar also. He will be undergoing muscle and nerve test on Tuesday and we’re still hoping that he will be negative on that diagnosis.

    Jill
    Participant
    Posts: 0
    Joined: 06/02/2019
    #175464
    Reply To: Help :(

    At least you are now making some progress albeit after a difficult wait. Please do keep us up to date on further progress as clearly there is still much more to achieve for you.

    Mike

    SO many love songs, so little love.

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