White Matter Disease

Posted by laylasmom @laylasmom, Feb 26, 2023

I am a 65 year old woman. I passed out during covid and ended up on the floor in my bathroom unable to move my legs. I laid there for almost 15 hours and finally I was able to slowly crawl to reach my phone. I went to the hospital and they did many tests to try and determine why I fainted and why I was paralyzed. On the MRI they noticed I had white matter in my brain. My neurologist did many labs and ordered a spinal tap. After 3 attempts, they could not get out enough fluid making the spinal tap unsuccessful. The impression on the MRI said "nonspecific T2 FLAIR hyper intense white matter disease". Differential considerations to include chronic ischemic microvascular disease vs vasculopathic/inflammatory process or demyelination. I did some research and I think I would benefit to see a neuroradiologist. My neurologist is not able to determine the cause of these lesions so I think my next step is to go to Mayo in Rochester, MN (I live in Minnesota) and try and find a neuroradiologist there. Has anyone been diagnosed with white matter disease and what was your next step? Some of what I read on line was pretty darn scary.

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@pb50

I put all important to-do’s on my calendar like an appointment and set a calendar alert to go off the day before and another an hour before. Hassle but best method I could come up with.

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Good thinking pb50,I've started using medication alarm to go off when tablet time.i have a diary too .

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