Very Worried, confused too

Hello everyone, I have come to this forum looking for a bit of guidance. Over the past two years I have experienced significant muscle and facial wasting. I’ve lost a total of 20 lbs and have gone from an above average physique to a much thinner one. In my face I’ve noticed the wasting to be temporal (sides of my head) as long with thinner jaw muscles and less padding over my cheek bones. Body wise I’ve noticed the majority of the decrease to occur in my deltoids, traps, and shoulders, but my quads and calves are much thinner too, so this hasn’t exactly been completely localized to a certain set of muscles. I understand the characteristics of FSHD tend to be a muscle loss in certain parts of the face, as well as most of the wasting coming from the deltoids and shoulder muscles. I don’t fit the ideal diagnosis properly, so I’m still up in the air on what to be looking for. It’s been in the back of my mind now for awhile. Good news, I can still whistle amazingly, and have no difficulty pronouncing my “m, b, and p” letters as I’ve read can be a sign pointing to this disease. Another thing that might be the make or break for further investigation is my appetite. I have no idea if there is any literature on FSHD causing appetite loss, but compared to when I was healthy my appetite is so greatly diminished that I’m often only truly hungry for one meal of the day, the rest I eat out of necessity. I also get very full after eating very little. Now, if this doesn’t have a thing to do with FSHD or any form of MD, then I need to be looking elsewhere, perhaps a cancer of the GI and I would say HIV but I’ve been tested a few times just based on the weight loss alone and negative results everytime. I have attached a few pictures that may help to see if I have the stereotypical winging of the scapulae that is so common with FSHD. It may just be me paranoid, so sometimes it helps to get the opinion of people who I’d consider experts living with the disease.
Thank you!