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Hi I’m Peggy. I haven’t been diagnosed officially. I can’t get my doctor to test me. I know about it because I have bad seizures when I was drinking diet coke and very sick. I have progressively had more problems until my neuro system is breaking down, cognitive problems, my retinas (in my eyes) have cysts they can’t explain (they said it was from stress, ha!) and I have tissues (muscular) pain and spasms all the time now. I was diagnosed with Fibromyalgia but I think it stems from the PKU problem. I do wonderful when I don’t eat any protein. I have noticed that when I was eating soy products it was almost worse than eating meat. I can’t digest beans and lentils either. I can’t tell you how relieved I am to find someplace that actually knows what I’m going through. I know I’ll have to find another doctor to help me pin this down technically, but I’m already beginning the diet and I notice a difference already. Glad to be here. Peggy C

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