Worsening muscle pain, elevated CK , weakness

[jajaa6]

Hello. 28. Black male.HIV undetectable . I have been experiencing muscle pain primarily on my left leg and back but occasionally in other limbs since August. I have had an extensive workup since July of 2021 for extremely vague symptoms that have no explanation.Arm weakness, confusion and memory issues first noticed in early 2021. Stomach pain, Nausea and right rib pain onset beginning in July of 2021 with full gastrointestinal workup including clear colonoscopy and upper endoscopy Countless tests run by specialists over the last 2 years for with no real answers. CT Scans of my abdomen (4?), head(1) and back(3) have consistently been clear (most recent/abdomen & back 3 weeks ago) as well as numerous blood panels. Ultrasound of my leg showed nothing however CK was extremely high leading to diagnosis of polymyositis by neuro despite my concerns that it's something more. Prescribed prednisone but CK was still in the 1,000s a month later in the ER. I am now having widespread muscle jittery twitches localized to my left leg but occasionally in other areas, worsening leg and back pain and some issues with balance. Also leg cramping when I lie down that goes away once I walk around . I know you all ALS doesn't cause pain but the combined feelings of weakness, twitching, and muscle damage confirmed through the CK has left me very concerned regarding what will happen next. Please help.

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[Nikki J]

You have a diagnosis and we don’t see cks like that in ALS. Even without anything else that result would make me say it is something else. Please continue to work with your doctors. If you take hiv meds ( you said hiv undetectable which makes me think you probably do) some of them can cause muscle issues