Today my daughter was finally tested and received the real diagnosis of myotonic dystrophy. Up until now we could hope and pray that it was something else, but we have to face reality. My ex husband was diagnosed and died 9 years later. The Dr. said that most likely her disease would be worse as she had developed the disease 10 years earlier. She faces an emg , blood tests , an echocardiogram, holter monitor, a sleep apnea test and pulmonary tests. It is a little overwhelming, no a lot overwhelming. I am sorry I just needed to vent. I am so angry at everything and nothing right now.
