And, one more clue: my symptoms are predominantly limb-girdle. I have almost no eye involvement (just a bit of eyestrain now and then). I sometimes have mild bulbar symptoms. I have weakness in my neck, arms and legs. My first and worst symptom, though, is truncal weakness. This puzzled the doctors and delayed my diagnosis. I often have trouble holding my upper body upright.

All of this would sound like a dok-7 CMS except for the little fact that I didn't notice any symptoms until I was 43.

Abby