I have been diagnosed with Central Core Disease (CCD), one of my siblings was diagnosed with CMT, and another sibling with ALS,by the same neurologist :/ and Mum was diagnosed with KWL and then SMA....by a different doctor....We all have the same symptoms the biggest one is weakness in the thighs, but progressing rapidly to other parts of the bodies muscles. My Mum is in an electric wheelchair as she has lost all muscle in her body, my future in the waiting...BUT I chose for the last 20 years to find a cure, and my fight lead me hear by chance, and I am hoping to find some sort of cure or to limit the wasting of the muscle, I guess it would take a huge miracle to help my mum at her stage, but anything would be better than how her living conditions within her body are now. She lives with guilt for doctors telling her she gave this to her children, and I would like to tell her different. What do I do now for the "cure" of this muscle wasting disease and help save my family and myself from this way of life we have not accepted but live with.
Thank you to any and all responses to my post.