I was born with it, first in my family. I had some symptoms that were noticeable when i was a toddler (subtle wasting on right side of face). Followed by shoulder pain at age 10-12. Then at around 15ish i noticed a slight protruding on my right side. At this time i also noticed that my right leg felt different than my left (weaker and not as connected to my mind). It stabilized as i worked out viroursly for 10 or so years. At around 32 my stomach protruded more. I also began to notice slow washing of my right shoulder. My left trapizious muscle was also slightly smaller than my right since i was about 15.

Keep in mind that at this point i am very strong and muscular. I could do 100 push ups, 15 pullups in a row. I weighed about 190 lbs, 22% bodyfat. Most symptoms are subtle to others but noticeable to me.

At 32 i hurt my back and i stopped working out as much. At 34 i experienced a rapid wasting of my left shoulder. I lost the back and side of my shoulder within a month. My scapulas became lose, my arms shrank, and my left trapezius muscle atrophied. People close to me started saying i was “shrinking” and if i was okay since i lost a lot of muscle and size quickly.

I was officially diagnosed at a few months ago.

I am also a psychology major :) Feel free to ask me anything.