We got the results from Jojo’s MRI and there is good news and not surprising news. Thankfully there is no bad news. First the good: there is no structural damage to her brain or spine. Translation, Jojo does not have brain damage and has never had a stroke.
The not surprising news: there was a non-specific finding. What does that mean? It is a fancy way of saying there is something abnormal and nobody knows what it means. Sounds familiar, right? Like the variances of unknown significance in the genetic testing. So Jojo continues to befuddle the medical community.
The non-specific finding: there are perivascular spaces in the corpus callosum. Translation time again. Perivascular spaces are little pockets of fluid that normally occur around the blood vessels in the brain. They are normally in the basal ganglia, cortex, and mid-brain. They are not normally in the corpus collosum, which is just below the cortex and connects the right and left sides of the brain.
There is a group of metabolic disorders this finding is to which this finding has been associated. Mucopolysaccharidosis. Don’t research this on the internet, it is terrifying. It is weird because it doesn’t fit for Jojo. This wasn’t on her doctor’s radar at all. Most of the problems associated with these disorders have been ruled out for Jojo. And it didn’t show up in the genetic test. So most likely, this will turn out to be nothing, or nothing that anyone can make a diagnosis from. Or maybe some mild, rare variant of Mucopolysaccharidosis. The next step is to do another blood draw for full metabolic testing, which we are doing tomorrow. Her neurologist is thinking of this not as an answer, but just another sign post indicating where to go next.
Meanwhile Jojo continues to get stronger and stronger, which is a much better indication of her prognosis than a non-specific finding on a scan. Go Jojo go!
Jojo The Strong 