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  • I have a similar story to yours, it's been 3 years and no diagnosis. Please let me know if they do confirm it's metabolic myopathies. How did your Nero come to figure this out. My Nero at this point thinks I'm just dealing with anxiety. Thank you
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    soulkatha
    I had a visit with him yesterday. I will be taking prednisone yet again but this time for six weeks. He wants to repeat the CK test after intensive exercise into three weeks of prednisone to see if that helps subside the level.

    By the way, he now wants to have the Invitae comprehensive myopathy panel (test code 03361) conducted. Hope this helps.
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    soulkatha
    And, my symptoms persist. Left wrist joint has worsened. Lost 10 pounds in last three months. Effect of that visible in biceps and hamstring. And other weird issues have surfaced in the past four months. Have cramps after walks. Good thing is so far I have been able to walk casually in trails for an hour (like once in two/three weeks)
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    soulkatha
    Just wanted to update you. They performed a 03361 invitae myopathy panel genetic testing that looks for 52 genes for possible myopathy. That came out normal. Doc is out of ideas at this point and thinks it is likely a metabolic myopathy that we don't know about.
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