Advice needed: Late Onset possible MD at 38 year old Male

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    Advice needed: Late Onset possible MD at 38 year old Male

    I know we are all different and MD effects all in different ways but please could someone give advice or compare there symptoms to my current issue

    Male/ 38 years old

    Around 2012 i noticed when trying to kick start a motorbike my legs were weak, this weakness is just limited to my upper legs/thighs only

    Due to stopping running it has slowly progressed which i assumed was due to lack of physical activity to where i need to use a handrail to climb stairs, i assumed it was a back problem

    Around 6 months ago my walking gait was awkward and people commented on it and i can only climb stairs with a handrail, also i can only ride a push bike sitting down as i tried to stand up and its not possible.

    Getting up out of a chair i used my hands to push up, climbing ladders is hard as i used my arms more than legs

    I cant step up on a stool unless i use my hands

    I saw a doctor and after blood tests came back my CK levels were CK8200 which is around 41 x normal max level (normal range is 22 to 198)

    I then had a MRI as they through it was a neurology brain or spine issues, MRI of brain and spine was clean but on my thighs it stated the following

    Bilateral wasting and weakness of both thighs, No active myositis is demonstrated.

    My thigh muscles wastage is VERY noticeably now

    I saw a specialist who said its possibly polymyositis or IBM and he refereed me for a EMG test

    I only have issues in my thighs and no other issues, i had a EMG electrical test and the specialist stated its looking like a form of muscular dystrophy possibly Limb Girdle, he took a blood test to screen for DNA anomalies which takes awhile to come back. nothing confirmed just guess work at this stage

    I am now awaiting a muscle biopsy

    As stated only issues is in upper thighs, my shoulders are strong and so is my upper body, my calves ok and strong and not enlarged

    I walk more on my heels than middle front foot but walk is normal-ish

    So Summary is as follows
    Current age 38/ male, very slight symptoms probably started at 30 years old so over 8 years
    CK Levels 8200+ around 41 x normal max level
    EMG Test confirmed issues- awaiting summary
    Weakness in upper leg quadriceps/Hamstrings thighs only.
    Weak getting out of chair and climbing stairs requires hand rail
    Since last 8 years of slight symptoms- 2012 to 2020 this issue has very slowly progressed i would say at a rate under <5-10% decline although my upper thighs have wastage more

    The wobbly gait i had for a few months has stopped and i walk normal-ish now

    Posts: 0
    Joined: 01/01/2020
    Reply To: Advice needed: Late Onset possible MD at 38 year old Male

    I ran for years, but it came to the point where I just fell over if I tried. I had for a few years previously, the sensation that I was likely to fall forward. The eventual lost of ability wasn’t due to stopping, I just no longer could. I have Becker MD, diagnosed in 2003 aged 28.

    I first had cramp in my groin in the mid 1980s, but it was just put down to “growing pains”. With hindsight, being poor at football and school sports etc was a tell-tale sign that I had BMD, that and the enlarged calf muscles; which in fact wasn’t muscle, just tissue. (pseudohypertrophy).

    I can’t now explain why I left things so long, as I was clearly having difficulties with stairs in my early 20s, and fell over sometimes for no apparent reason. It was only when my then wife nagged me into submission, did I go to see my GP. A simple blood test, followed by diagnoses several weeks later at the hospital. I was told the high CK levels were conclusive, and I had Becker MD. If only the rest of life was as straightforward as that diagnosis!

    Both my teenage daughters are BMD “carriers”, but won’t themselves be affected, only future sons will have a 50/50 chance of being affected.

    Posts: 747
    Joined: 05/09/2010
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