Living with Emery Driefuss Muscular Dystrophy

hello beautiful family. I just got diagnosed with Emery driefuss muscular Dystrophy. I am 50 and use to be very active. I am now in in a wheelchair due to weakness in my legs. I spend most days in bed as at that is where I feel mist comfortable. what's everyone's story?

How to Diagnose Muscular Dystrophy with No Prior Data?

How do you reach a diagnosis for a muscular dystrophy when your mutation is the first one documented? There’s a first for everything but I’m feeling really lost. Without any data to go off of how do I find out what my diagnosis is?

Dealing with Muscle Weakness and Fatigue

so, my primary doctor thinks I have some form of muscluar dystrophy. for background, i was very athletic, in basketball, track, and show choir until the age of 15. around that age i started to deal with a lot of fatigue, joint pain, and muscle weakness. my muscles eventually atrophied, and they havent recovered since even with physical therapy. i was diagnosed with fibromyalgia, but I don't feel like that was an accurate diagnosis. i dont relate to most othe the symptopms. i regularly have a low creatine level in bloodwork, so all I can do at this point is wait for a specialist to get back with me. im 22, and whatever is wrong with me is steadily getting worse. has anyone else went through anything similar? i wasnt the strongest kid growing up, but i didnt have many noticeable problems until the age of 15.