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Profile picture for ymaddox1970 @ymaddox1970

@swalex I had mri’s it shows lesions in the white matter, but not enough to be consistent with MS. Which they thought I might have at first. Had a repeat MRI and there were a few more lesions, but last mri showed nothing new. They actually said that the lesions was normal for age. Nothing more was said after that and I had to push to get that done.

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Replies to "@swalex I had mri’s it shows lesions in the white matter, but not enough to be..."

@ymaddox1970
Hi
I was also diagnosed with missing white matter back in 2007. It doesn’t necessarily lead to MS, but depending on where it’s located in the brain, it can contribute to symptoms like muscle weakness. In my case, I also have Chiari malformation type I, and the areas with white-matter loss extend from the SMA to the cerebellum.

I’m not disabled, but I’ve gradually developed more difficulty with stairs and walking uphill or long distances. Because of this, I try to keep up with any credible neurological research and information.

Here are the latest if you like:
Consensus-Based Expert Recommendations for Diagnosis and Clinical Management of Vanishing White Matter
https://www.neurology.org/doi/10.1212/WNL.0000000000214320
And since I have elevated VLCFA, this paper gives additional insight.
Neurofilament light chain as a potential biomarker for monitoring neurodegeneration in X-linked adrenoleukodystrophy
https://www.nature.com/articles/s41467-021-22114-2