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Leg Weakness and Mobility Issues
Autoimmune Diseases | Last Active: Oct 28 8:17pm | Replies (137)Comment receiving replies
gaboslastresort,
I am so sorry to hear about your physical challenges. The first paragraph of your story sounds very familiar to me. My only question at this time is: Are you on a statin, normally for cholesterol control? I have a very rare condition that affects 2-3 people in a million that was diagnosed in October 2024. The name of the condition is necrotizing autoimmune myopathy. High levels of 'Creatine Kinase (CK), S', 'Aspartate Aminotransferase (AST), S', 'Alanine Aminotransferase (ALT), S' were key initial indicators used to identify it in my case. I am in remission and have regained a great deal of my lost function with the excellent treatment I have received at Mayo. I wish you all the best in your journey to find answers.
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@johnlagejr
Hi gaboslastresort,
I’m so glad to hear that you received excellent care at the Mayo Clinic.
Necrotizing autoimmune myopathy (IMNM) can be extremely debilitating if it’s not identified and treated early. While it is not a directly inherited genetic disorder, certain genetic factors—particularly the HLA-DRB1*11:01 allele—can significantly increase susceptibility. This risk appears to be higher when individuals are exposed to specific triggers, such as statins.
I carry the HLA-DRB1*11:01 allele myself and therefore need to avoid statins. Unfortunately, many healthcare professionals are still not fully aware of this association.
Actually, while there is no known cure, prompt treatment can lead to significant improvement, according to this YouTube video. https://www.youtube.com/watch
Wishing you continued strength and the very best in your recovery.