Brain Lesions

[Seifert_09]

So I just found out I have brain lesions and am really kind of lost and scared . To those of the group that have lesions what is to be expected? Any and all info would be greatly appreciated.

[StevenSims]

Hi,

I have a lesion in the splenium of the corpus callossum (centre of brain) I sent my MRI to KKI and the doc said its typical what boys have with ALD but as there is no gadolinium showing it is stable! It's been there for a good few years now and is still stable! I've got another MRI in 2 weeks! It's important that you have gadolinium enhancement on your MRI as gadolinium showing is a marker to say if it's active or stable! I think many of us have lesions and I think the scanners are getting better just hope they stay stable for us!

Good luck and all the best

[Aaron98]

Disclaimer: I am not an expert on lesions in ALD/AMN, and am just relaying what I have been told by my local neurologist and an ALD specialist.

Lesions are quite common for men with AMN, and they do not always indicate adult cerebral ALD. It depends on the size and area of the lesions. I have been told that I have minor lesions, but they are not in the areas that are concerning for adult cerebral ALD.

The worst "bright" areas that appear on my MRIs are what is referred to as "dying-back axonal degeneration", where damage to the spinal cord is sending a signal back up to the brain. Not concerning for adult cerebral ALD, but still indicating that the spinal cord is degenerating.

I would definitely recommend sending a disc of your MRIs to an ALD specialist. I do this every year. They can give you peace of mind as to whether you are stable or need to be concerned. Best wishes!

[Seifert_09 in reply to Aaron98]

Thank you for the info. Where do you send your MRI to be examined?

[Aaron98 in reply to Seifert_09]

Dr. Fatemi at KKI.

[SongStream in reply to Aaron98]

Aaron, just want to make sure I understand correctly but are you referring to brain lesions which are the result of signals sent from the spinal column due to axonal degeneration? I also had previous MRI checked by Dr. Raymond in Minnesota but I have had no brain lesions, only spinal impact.

[Aaron98 in reply to SongStream]

Yes, you nailed it, Steve.