What is Immune-Mediated Necrotizing Myopathy?

I'm glad you asked.

A) it’s a disease where a person’s immune system attacks their muscle cells.
B) it’s my new diagnosis. More specifically, the anti-SRP variety.

I began having trouble walking in late April and then started losing strength in my back and legs. Blood tests showed evidence of muscle damage. MRI backed that up. Muscle biopsy showed that muscle cells are dying. Neurologist was able to rule out scary things like Lou Gehrig’s Disease.

This isn’t a very well known disease but it’s doable. Treatment initially involves trying to get the body's immune system to stop killing its own muscle cells. This is usually done with steroids and, in my case, immunoglobulin therapy: 3-6 hours a day of infusion of these special antibodies which somehow convince the immune system to chill out.

Treatment further out seems to incorporate reduction of steroid dosage and a possible other immune-suppressing drug. 

Here are some jargony articles about it:

• Excellent overview of the disease, diagnosis, treatment, and prognosis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6019613/
• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5476327/
• https://www.myositis.org/about-myositis/diagnosis/diagnostic-criteria/diagnostic-criteria-for-necrotizing-myopathy/
• https://www.cureus.com/articles/30533-autoantibody-negative-immune-mediated-necrotizing-myopathy-responds-to-early-and-aggressive-treatment-a-case-report