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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Helen, Volunteer Mentor | @naturegirl5 | Sep 13, 2023

In reply to @goodie "What is the outcome, Sandy answer for the hrradaches? What other symptoms get bad? How long..." + (show)

@goodie Small vessel ischemic white matter disease refers to periods of the stoppage of blood flow through the small vessels of the brain. Ischemia is a type of stroke in the brain and when there are many stoppages like this it can lead to more serious consequences such as dementia. This is something that requires treatment and management by a physician, typically a neurologist, who specializes in cardiovascular disease.

Microvascular ischemic disease:

-- https://my.clevelandclinic.org/health/diseases/22927-microvascular-ischemic-disease

Have you been diagnosed with this? Or are you asking for a loved one?

jimmyray | @jimmyray | Sep 13, 2023

In reply to @goodie "Is dementia inevitable? Does anything help the symptoms? It seems to affect everything, balance, walking, talking,..." + (show)

Have you looked at Sleep Apnea? You may need a CPAC unit.

mitfit | @mitfit | Sep 13, 2023

In reply to @naturegirl5 "@goodie Small vessel ischemic white matter disease refers to periods of the stoppage of blood flow..." + (show)

Myself

mitfit | @mitfit | Sep 13, 2023

In reply to @naturegirl5 "@goodie Small vessel ischemic white matter disease refers to periods of the stoppage of blood flow..." + (show)

Thank you. Very helpful.

Helen, Volunteer Mentor | @naturegirl5 | Sep 13, 2023

In reply to @goodie "What is the outcome, Sandy answer for the hrradaches? What other symptoms get bad? How long..." + (show)

@mitfit Are you seeing a neurologist? What treatment or medications is recommended for you? I am hoping that your physician is helping you to control this so that it does not progress anymore.

pkh3381 | @pkh3381 | Sep 13, 2023

In reply to @goodie "What is the outcome, Sandy answer for the hrradaches? What other symptoms get bad? How long..." + (show)

I was told some time ago that I have small vessel ischemic white matter disease and that it makes my neurological major anxiety and depression disorder worse, but that is all the neurologist told me. I also have a neurological involuntary movement disorder, in the form of a body sway that affects my balance and walking, and wonder if the white matter disease could also affect that? If anyone knows anything about this, I would appreciate help. I also have MCI, which was once diagnosed as "early dementia", and wonder if the white matter disease is a factor in this? I wish the neurologist would have ever told me more!
P

mitfit | @mitfit | Sep 13, 2023

In reply to @naturegirl5 "@mitfit Are you seeing a neurologist? What treatment or medications is recommended for you? I am..." + (show)

No, primary care said no further action. I am going to ask Mayo about it. Thank you for your comment, its very helpful to me.

pkh3381 | @pkh3381 | Sep 13, 2023

In reply to @goodie "What is the outcome, Sandy answer for the hrradaches? What other symptoms get bad? How long..." + (show)

Helen, I don't see that neurologist anymore and haven't for some time. I guess the reasons may be obvious. 😉 No, all he did was tell me that it did affect my depression and anxiety disorder and confirmed that this could make it harder for me to "control" the anxiety and depression. He never explained anymore, never treated me in any way. I didn 't know anything about it, but with the lack of further explanation, I didn't think much more of it. I have also had brain aneurysms [small] for which he did annual brain MRI's and once I started getting the reports myself, I always noticed the mention of the white matter disease. The only neurologist I have now seems to be only for the body movement, which is his specialty. I asked him at one time if I should have another neurologist for all my other conditions, but he said no. Although, he does not do anything else for me. He has never ordered a brain MRI for me and he knows of the aneurysms, and I was told when they were discovered that I should have annual brain MRI's to watch for growth, etc. I realize I should have pursued this more myself, but my Dr and hospital experiences had led to my just giving up and letting things go.
P