I too am a carrier of ALD. My sisters and I are all having problems. We are currently taking baclofen for legs spasms. It helps with the spasms, but for me not the pain. Although it does for my younger sister. I hurt in my hips and back and like you, I toss and turn at night because of the pain. I completely understand how you feel. I lost my son in August 2008 to this disease, he was 25. He was 7 when found out that he had it. I wish there was something that I could tell you. But you are already doing everything thing that I know to do. I pray that they will find a cure for this disease soon. I wish you and your son all the best.
Sarah Robbins
Delhi, LA
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I too am a carrier of ALD. My sisters and I are all having problems. We are currently taking baclofen for legs spasms. It helps with the spasms, but for me not the pain. Although it does for my younger sister. I hurt in my hips and back and like you, I toss and turn at night because of the pain. I completely understand how you feel. I lost my son in August 2008 to this disease, he was 25. He was 7 when found out that he had it. I wish there was something that I could tell you. But you are already doing everything thing that I know to do. I pray that they will find a cure for this disease soon. I wish you and your son all the best.
July 2, 2010 - 2:34pmSarah Robbins
Delhi, LA
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