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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Profile picture for pb50 @pb50

By all measures I’m doing fine. I am waiting for the 28th to get a read out of my neuropsych testing and then a visit with neurologist on the 11th. I think the white matter ischemia is interesting but not a major influence on the deterioration of memory - in my case it’s really more word retrieval than memory per se.

They say if you don’t remember where you put the keys that’s frustrating. If you don’t remember what the keys are for, that’s likely on the dementia path. So far, I remember what the keys are for 🙂

Thanks for asking. I find that once you disclose that you may have MCI, conversation with friends becomes stilted and awkward. You’d think it was contagious. 🙄

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Well I'm forgetting lots of important stuff

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Profile picture for red79 @red79

Well I'm forgetting lots of important stuff

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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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Profile picture for pb50 @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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Profile picture for vivian1911 @vivian1911

I had been having severe headaches, occasional double vision and imbalance issues. I do have a serious knee injury which caused my left left to be shorter after major surgery and titanium rods were inserted.
MRI showed white matter in my brain associated with atherosclerotic vascular problems. I am 83 years old, and physicians seem reluctant to go further in any major studies. In other words, "brain changes occur in persons over 80 and especially if you've had a serious accident.
I also suffer from long Covid - very lethargic, sleeping a lot, compromised immune system. Is there really a support group that connects with physicians that research these unusual signs and symptoms post Covid.
To be honest, I have looked at a few of these comments and I am doing the same - giving a list of complaints. People need more in a support group. Need directions where to go, what studies are being done, etc. I am a retired advanced degree RN and have written to the NIH about this.
Anyone have any additional thoughts would be much appreciated. Faith Lindner (in case this is published, I prefer not to use my whole name)

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I was diagnosed after going to an ENT after an exam for hearing aids. The ENT sent me for an MRI of my head. He gave me no reason. According to the MRI I have severe white matter disease. The ENT told me not to worry about it. Lots of older people have it. I looked it up and I am worried. None of my doctors, including my internist and psychiatrist had anything much to say about it. My psych did say that it would likely kill me. He hasn’t brought it up again since that appointment. I have always neen one who trips and falls. I seem to change directions too quickly. I had migraines throughout my life including ocular migraines. They were severe and weekly throughout menopause and quit after it was over. I have had a few ocular migraines since, but no headaches. I get dizzy occasionally, but have never passed out. I was diagnosed with ADHD at 64 and take Adderall once a day. I will be 80 in April. I’m unsure how to react to this. Am I terminally sick? Will I have a stroke at anytime? Why will win’t my doctors address this with me? Otherwise I am healthy and active. Do I have a future?

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Profile picture for kjosborne @kjosborne

I was diagnosed after going to an ENT after an exam for hearing aids. The ENT sent me for an MRI of my head. He gave me no reason. According to the MRI I have severe white matter disease. The ENT told me not to worry about it. Lots of older people have it. I looked it up and I am worried. None of my doctors, including my internist and psychiatrist had anything much to say about it. My psych did say that it would likely kill me. He hasn’t brought it up again since that appointment. I have always neen one who trips and falls. I seem to change directions too quickly. I had migraines throughout my life including ocular migraines. They were severe and weekly throughout menopause and quit after it was over. I have had a few ocular migraines since, but no headaches. I get dizzy occasionally, but have never passed out. I was diagnosed with ADHD at 64 and take Adderall once a day. I will be 80 in April. I’m unsure how to react to this. Am I terminally sick? Will I have a stroke at anytime? Why will win’t my doctors address this with me? Otherwise I am healthy and active. Do I have a future?

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White matter disease (chronic microvascular disease) can be quite scary. I can be fine and then get very "wobbly" (my wife's word for it!) and have trouble standing. Your comment about changing directions quickly also hits home. I believe that you are referring to ataxia. I can be walking and suddenly veer off course. I sometimes have to grab onto something to prevent falling, although I have gone down pretty hard a few times. I was diagnosed in 2018 and am now 69. I feel fortunate that there has been no cognitive decline, just major gait and balance issues (and tinnitus). Also, be aware that having white matter disease means that you could be prone to lacanar strokes. I've had a few show up om my MRI's.

It is getting worse. Sometimes I think people think I'm drunk when I haven't even had a drink (occasional slurred speech also, but not lately). It is starting to impact my social life because I afraid that I will embarrass my wife when we are in a social setting.

Good Luck! There's nothing we can do about it. My neurologist said that they can't rotoroot my brain!

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