Adeneomyeloneuropathy

[Boba]

Has anyone ever heard of this disease? I just found out that I have a mutation on the X chromosome which leads to this with a very high probability (ABCD1 Gene). Symptoms can be. quite similar to ME.

https://rarediseases.info.nih.gov/diseases/10614/adrenomyeloneuropathy

 

[lenora]

HI @Boba.....from what I just read, it seems that research has been done on men. In order to get a clearer answer as to whether this has affected your spinal cord or brain, you need an MRI. I see that a Genetic Counselor is often indicated, so perhaps this is something you should think about.

I don't know anything about your case & symptoms, specifically, but it would appear that you join those of us who have other primary conditions and ME is a result of them. I fall into that category. In my case I began with a pituitary tumor and then problems with the spinal cord and then the brain. I'm now back in the ME league b/c of those other problems....were they the original cause, probably not, a virus was somehow involved, but at what time who knows? I wish you well as your questions are answered. Yours, Lenora.

 

[Boba]

HI @Boba.....from what I just read, it seems that research has been done on men. In order to get a clearer answer as to whether this has affected your spinal cord or brain, you need an MRI. I see that a Genetic Counselor is often indicated, so perhaps this is something you should think about.

I don't know anything about your case & symptoms, specifically, but it would appear that you join those of us who have other primary conditions and ME is a result of them. I fall into that category. In my case I began with a pituitary tumor and then problems with the spinal cord and then the brain. I'm now back in the ME league b/c of those other problems....were they the original cause, probably not, a virus was somehow involved, but at what time who knows? I wish you well as your questions are answered. Yours, Lenora.

Thank you so much for your answer. I will have genetic counseling in a week. I‘m really curious about what the doc is gonna say. It seems like I had a couple of underlying conditions which were always put in the psychological frame. I hope I can find my way out of this situation somehow.

Again, I really appreciate you for taking the time to answer.