Hi. My name is Kristie and I am 45. At 12 years of age I tested negative for VLCFAs and was told I dos not have ALD and could not pass it on. My sister, who has AMN, advised me to get retested since the test is only 80% accurate. I came back positive. I then cheated with my 23 year old son and got his adrenal function teared. It was insufficient. Since then he has also tested positive on the DNA test. Neither of us feel like we have symptoms although the neurologist seemed to disagree. We both apparently have some loss of sensation that we were unaware of and I have pes cavus starting. It was drilled into my head that this disease was untreatable, by my afflicted mom who died from the disease at 68. The women in my family don't seem to be as mildly affected as others I read about.
I am looking for all sorts of dietary information. I am looking into spinach, certain oils and oyster mushrooms. I would love to hear what most people out there are doing and what things are and are not helping. We go see a lipidologiat soon and I don't plan to start anything without running it past him/her and establishing some baseline bloodwork, but I want to learn as much as I can between now and then to share and understand better.