When I was diagnosed with AMN some years ago, I remember telling myself: I am ok with a wheelchair, but please, please leave my brain alone. So, as I was advised, I got the annual MRI. Nerve-wracking for the first several times, but became routine. Back in those days, the company line was if you don’t get it by 40, you won’t. Well, 40 came and went, and then they stopped saying that. So, I continued with the MRI thing.
At some point, I starting asking questions: so, if I am not a candidate for a bone marrow transplant, and there are no therapies, what is the point? So I stopped the scans.
Earlier this year, I was chatting with someone at Kennedy-Krieger who wanted to know when I last had an MRI. I was not sure, and explained my thinkings on the topic. She mentioned that it seemed as if the Minoryx drug may have some activity against cerebral lesions.
I went home, thought about it a bit, and scheduled yet another scan. Yesterday, I had the opportunity to try and distinguish my 2016 MRI with my 2022 scan. I could not see any difference and neither could Dr Fatemi. So good. Still, I was thinking about what I heard.
This press release aligns with what I have been hearing about leriglitazone. This may suggest that it prevents lesions, but what would it do to existing lesions?
I think that we are all overdue for a break- let’s hope so!