08/20/2026
Here is an updated list of where I am at in my editing queue. Also, an update on my daughter, Alexus, for those who have been following her story.
Tuesday, August 18, 2026 we had an appointment with Dr. Vu through Vanderbilt. After reviewing the MRIs and the binder of medical records I brought with us, Dr. Vu dropped a bit of a brick on us. Alexus does NOT have multiple sclerosis. She DOES have Paroxsymal Dysarthria Ataxia Syndrome, brought on by a central nervous system demyelinating condition, but they do not know what this condition is. The lesions, especially the mid-brain/PONS lesion is atypical of MS. So, we were admitted to Vanderbilt on Tuesday for further testing.
What we know - we know it is autoimmune. We know it is steroid dependent because every time she weans down off high doses of prednisone, symptoms return. We know the Trileptal works for the PDA Syndrome. Also, there is a 4th lesion that hasn't been mentioned.
What we don't know - we don't know if this is rheumatological. We don't know what it is exactly. We don't know if this is cancer, but they are pretty certain it isn't because the inflammation does improve and then comes right back during and after steroids, which isn't typical of cancer. Cancer is a very minute possibility, but not something they are looking at in the forefront.
She is being tested for Behcet's Disease, Sarcoidosis, Vasculitis, among a some other things.
Before anyone asks - yes, she was tested for Lyme Disease. It is not that. It is not Chiari Malformation because that would have shown up on her scans.
Currently, her IgG is very low, so they have to run further tests on that before they can do next steps which is immunotherapy through a medicine called Rituximab (sp?). After that, I am not sure of next steps.
In the meantime, I just want to thank everyone for their patience with me as I get my editing caught up! It has been a bit chaotic this summer, and I really do thank you so much for being patient and gracious amidst the chaos.
If you are too far for your comfort down the editing list, you are welcome to pay a reduced rush fee dependent on where your session falls. Please message me to address that!
