Do ALD patients get misdiagnosed with Autism and ADHD?

[artortega78]

When I was younger, I was being misdiagnosed with Autism and ADHD. That happened when I was in kindergarten and it kind of went from bad to worse during 4th grade because I was not paying attention and being very lazy during class. I was getting straight Fs during 4th grade. I improved my school performance in 5th grade and beyond. I was able to graduate from high school and I am halfway through college. I did not know I have this genetic disorder until my younger cousin was having seizures 4 years ago and I was in Mexico at the time. A year later, I was diagnosed with AMN with prior(past) cerebral involvement and adrenal insufficiency. I have some lesions on my brain, but I am stable and fine. I am able to do everything except doing work that requires carrying heavy things because I had almost no cortisol in my body before. In my family, no one knew that ALD was running in the family until my younger cousin deteriorated to coma and died from CCALD last year. I am the only family member that has ALD(AMN) right now. Family History: My great-grandfather may or may not had AMN or my great-grandmother carried the mutated gene. My grandmother, my aunt, and my Mom carry the mutated gene. I have an uncle that has 2 X chromosomes and carries the mutated gene in one of them. I have 2 other uncles and another aunt that do not carry the mutated gene and they are fine. I have 2 younger sisters and we do not know if they carry the mutated gene. On my aunt's immediate family, she has 4 daughters and 2 sons(1 died). My other younger cousin does not have an ALD gene and we do not know if my 4 female first cousins carry the mutated gene. One of them already has a daughter.

[AussieBob]

Yes far too often and there is no excuse at all for it. You do not suddenly catch Autism or ADHD. It is a ludicrous ill thought out diagnosis. I can email you an article or you can go to my website and under educational resources you will find a good article on the subject website leukodystrophyresourceresearch.org

[Kranal]

My 30 year old son is also a victim of misdiagnosis. When he was 5 years old he was diagnosed with ACTH Receptor defect, because he lacked cortisol in his system. We were assured that he could hope to lead a normal life span with daily treatment with oral steroids, which he took between the ages of 5 years and 25 years. There were 6 monthly check-ups at the local hospital, where his height and weight were checked, and guidance given on how to treat any adrenal crisis. He went through school, then university with little difficulty. However, in May 2015 his vision started to deteriorate, and an MRI scan showed white lesions in his brain, and the vision loss was due to optic nerve damage. A local UK hospital was prepared to undertake a very rare bone marrow transplant on a 25 year old man, but the condition had progressed too far for any successful outcome. He is now wheelchair bound, because the advancement of AMN started after the diagnosis of adult cerebral ALD. There was no hint that this genetic defect existed in our family. My mother must have passed the gene to me. She was the oldest of five siblings. I had 3 uncles - all free of this disease. An aunt and her family - all free of this disease. My grandmother must have passed it to my mother. My grandmother had many sisters, and none of her descendants appear to be affected by adrenoleukodystrophy. There was no hint that a leukodystrophy existed.