Viewing 7 posts - 1 through 7 (of 7 total)
  • #164967
    I wasn't drunk!

    I attended an interview for an access course at University recently.
    The two interviewers were giving me strange looks because I could hardly walk
    I also staggered a bit.

    I think they thought I was drunk.

    I am undiagnosed.

    "If I am the smartest person in the room, then I am in the wrong room"

    blunttrauma blunttrauma
    Participant
    Posts: 0
    Joined: 11/12/2018
    #165298
    Reply To: I wasn't drunk!

    Hi, my name is Daniel.
    Iam undiagnosed professionaly also, but Iam now certain I have a form of MD, possibly a form limb girdle as my symptoms match from the research I have been doing online.
    Walking strange and staggering have been a issue for me since my teens Iam now 34 and I often catch people studying my gait in confusion.
    I also have massive MASSIVE calves, that I catch people staring at, Iam fairly self conscious about all this.
    Going up stairs and standing from chairs is a struggle for me and I find myself watching other people’s ease of movement and Iam jealous.
    My liver ALT/AST enzymes since my teens have been very elevated.
    Iam currently in Vietnam and won’t be back in Australia for 2 more weeks, at which time I can check the level of creatine against the elevated ALT/AST from 15 yrs of past liver tests.
    How old are you, do you think you have MD ?
    Anyone else can weigh in also feel free.

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
    #165304
    Reply To: I wasn't drunk!

    Hi Daniel. Welcome to TalkMD :waving:

    I’m 40 and have a type of MD called Ullrich CMD. The symptoms you describe are certainly associated with MD. Will you pursue diagnosis once you are back in Australia? I’m sure MDUK can help put you in touch with their Australian contacts should you need practical support.

    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
    #165305
    Reply To: I wasn't drunk!

    Hi Daniel,
    I am 66 yrs. old and will be seeing a doctor about the results of my second blood test early tomorrow. I had difficulty walking about 8 yrs. ago, but that was only for a few weeks. Since then I have had episodes of fatigue and muscle weakness. Between episodes I could walk ok. Until recently.

    Kind regards,
    Bill.

    "If I am the smartest person in the room, then I am in the wrong room"

    blunttrauma blunttrauma
    Participant
    Posts: 0
    Joined: 11/12/2018
    #165306
    Reply To: I wasn't drunk!

    I attended an interview for an access course at University recently.
    The two interviewers were giving me strange looks because I could hardly walk
    I also staggered a bit.

    I think they thought I was drunk.

    I am undiagnosed.

    Hello and welcome to blunttrauma. I have of heard similar experiences. People can be very quick to judge, you have to hope they are in the minority.

    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
    #165385
    Reply To: I wasn't drunk!

    Hi thanks for your replies! I was hesitant to post on the forum as Iam not diagnosed as I stated.
    But I have always known something was not right with me physically.
    My strange walk has been brought to my attention many times since high school, initially I was surprised I walked funny, then I even made up excuses and tried to correct it by swinging my arms more or trying to engage my abdominals or stretching my massive calves all the time.
    My liver enzymes have always been very elevated, I had a liver biopsy which showed fairly healthy liver. Could the doctors have overlooked elevated creatine in parralel with This? I don’t know as ham in Vietnam.
    I’ve always been fair a Bit weaker then male peers, but in the upper leg, buttock, core mucsles A LOT weaker.
    I basically can’t run at all.
    But I’ve lived a full life and always just thought if I tried harder, worked the mucsles at the gym, walked up steps I’d get stronger.
    But I do not get any stronger. And it’s clear now it’s something more as I can’t do functional movements that a child can.
    Recently a Vietnamese girl asked me what was wrong with my legs.
    I started doing a ALOT search online different forms of MD and immediatley knew in my heart that I have something similar to this, the symptoms I have had for a long time people were describing exactly.
    Sar78 hi I will absolutely pursue diagnosis when I return to Ausralia my life is too affected now to not look for answers for my symptoms.
    The first thing Iam going to do when I get home is check all my liver tests since age of 15 to see if creatine is elevated also.
    Is creatine kinase level ascertained in a regular blood test?
    If so and creatine kinase is elevated in parralel with AST/ALT levels could doctors have overlooked this for so long?
    I was so sure I have a form of MD THAT I was going to start doing test in Vietnam.
    Some forms of MD don’t have highly elevated creatine kinase I believe?
    Hi blunttrauma all the best with your results tomorrow!

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
    #174979
    Reply To: I wasn't drunk!

    To answer my own question, CK levels in blood is a specific test different from creatinine levels.
    So I’m back in Australia now and my CK levels are 10 times the normal range. Go for another test tomorrow after exercise to compare with the first test.
    I wonder how blunttrauma is getting along?

    djt91184
    Participant
    Posts: 0
    Joined: 02/01/2019
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