| Re: Help - I think I might have fshd (teenage girl)
Within the last year both of my children were diagnosed with FSHD. My son is 17 and my daughter is 20. It is nearly certain that either their father or I also have it, but neither of us are symptomatic enough to know which one to test first. Therefore rest assured that the symptoms are variable even within families. They say typically boys are diagnosed by the age of 20 and girls by 30. With the family history I understand your concern that your shoulder pain is an indicator. It may be...or maybe not. Your doctor can help you get answers so I recommend starting with a doctor about your shoulder pain while making sure he/she is aware of your family history.
I really want to talk about your concerns for your life. My daughter could care less about her diagnosis, but was devastated about the probability that each pregnancy would have a 50% chance of producing a child with it. To be clear, my daughter does have back pain and goes to physical therapy occasionally. My daughter was born to be a mother (don't even get me started on how she mothers our dog) and she immediately began looking at options. While they do offer pre-implementation genetic testing which can accompany in vitro fertilization (raising conception/beginning of life debates and cost concerns), I am encouraging her to see where they are at with treatment options when the time comes. My kids had very normal childhoods and were completely unaffected until late teens. She is about to be engaged and my son is very open with his girlfriend about his diagnosis, the risk to kids, and that he wants kids. Our genetic counselor was very clear that most people have some genetic issue, but we just know what theirs is and it need not define them. I'm sure it has been tough watching your dad, but the sooner you have facts and can help strengthen your shoulder muscle the better off you will be.
About finding out if you have FSHD, a DNA test is the most accurate. Some of the symptoms are "winged scapula" which means your shoulder blades stick out. The documentation says symptoms typically it starts in the face...with your smile affected. My kids have no facial changes but do have shoulder blades that stick out and when doing a push up against the wall their blades nearly touch. My son had a high AST and high CPK count during soccer seasons, but my daughter never has so that isn't a sure indicator. My son lost weight very quickly with heavy exercise (thus the reason I doubt I am the parent with the disease...losing weight would be ok with me). My son can't hold a "T" positions with his arms out for very long without shaking. Everyone can be different. Even if you have the disease, please don't let it change your dreams!
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Help - I think I might have fshd (teenage girl) 
