1. < Stroke & Cerebrovascular Diseases

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 | @pb50 | Mar 18 5:51pm

@red79 @willow11 - can’t tell which of you asked which question. My recent brain CT for MCI says

Preserved brain volume for age. Mild chronic small vessel ischemia in the cerebral white matter

From what I understand it is like a lot
Of conditions - can be a bfd, or can be managed -‘depending on things like how diffuse it is when you discover it, whether you have diabetes, high Blood Pressure, if you are smoking still, etc.

It could be from trauma or it could be from coming of age in the 70’s 🙄
Could be because you’ve let things like weight and health slide too long (guilty!). Or it could be a combination of all those things. But it sounds like there are treatment strategies to arrest progression to varying degrees.

I’m sure mayo has some good articles as well but here’s a good one From Cleveland Clinic.

https://my.clevelandclinic.org/health/diseases/22927-microvascular-ischemic-disease
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2 replies
pb50 | @pb50 | Mar 18 5:53pm
In reply to @willow11 "I have no idea but with anything it varies from person to person. That is a..." + (show)
@willow11

I have no idea but with anything it varies from person to person. That is a question for your doctor who may not know either. when it comes down to it we are all unique.

Jump to this post

Exactly right. It doesn’t have to be a death sentence from what I read. It will just mean a serious plan that you get after hard.

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willow11 | @willow11 | Mar 18 6:05pm
In reply to @pb50 "@red79 @willow11 - can’t tell which of you asked which question. My recent brain CT for..." + (show)
@pb50

@red79 @willow11 - can’t tell which of you asked which question. My recent brain CT for MCI says

Preserved brain volume for age. Mild chronic small vessel ischemia in the cerebral white matter

From what I understand it is like a lot
Of conditions - can be a bfd, or can be managed -‘depending on things like how diffuse it is when you discover it, whether you have diabetes, high Blood Pressure, if you are smoking still, etc.

It could be from trauma or it could be from coming of age in the 70’s 🙄
Could be because you’ve let things like weight and health slide too long (guilty!). Or it could be a combination of all those things. But it sounds like there are treatment strategies to arrest progression to varying degrees.

I’m sure mayo has some good articles as well but here’s a good one From Cleveland Clinic.

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

Jump to this post

Mine was from Trauma and came on suddenly. I am 5’10 and weigh 160 pounds was strong and active prior to the concussion. Now it is headaches every day, cognitive issues, nausea, (that I control with very strong ginger Beer (which really isn’t an alcoholic beer)balance issues, (that I now know how to move safely after Vistbular Therapy. My doctor wasn’t happy with me using extra strength Excedrin, So I found Magtien and use that 400 mg Thiamine. That worked for a while, but no longer. Though I am still taking Magtien with Thiamine. Now I find, I can use caffeine (very strong Scottish black Tea). I have a Mug first thing in the morning and if I also have a Mug before bed, I can sometimes wake out without a headache and get to my morning cup. If the headache rears up in the afternoon I drink coffee with a shot of espresso. These keep me functioning, though don’t really help with the cognitive issues.

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1 reply
willow11 | @willow11 | Mar 18 6:08pm
In reply to @willow11 "Mine was from Trauma and came on suddenly. I am 5’10 and weigh 160 pounds was..." + (show)
@willow11

Mine was from Trauma and came on suddenly. I am 5’10 and weigh 160 pounds was strong and active prior to the concussion. Now it is headaches every day, cognitive issues, nausea, (that I control with very strong ginger Beer (which really isn’t an alcoholic beer)balance issues, (that I now know how to move safely after Vistbular Therapy. My doctor wasn’t happy with me using extra strength Excedrin, So I found Magtien and use that 400 mg Thiamine. That worked for a while, but no longer. Though I am still taking Magtien with Thiamine. Now I find, I can use caffeine (very strong Scottish black Tea). I have a Mug first thing in the morning and if I also have a Mug before bed, I can sometimes wake out without a headache and get to my morning cup. If the headache rears up in the afternoon I drink coffee with a shot of espresso. These keep me functioning, though don’t really help with the cognitive issues.

Jump to this post

By the way this all started with a bad concussion (50lb metal sign falling on head) when I was 65 and am now 70.

REPLY
1 reply
pb50 | @pb50 | Mar 18 6:16pm
In reply to @willow11 "By the way this all started with a bad concussion (50lb metal sign falling on head)..." + (show)
@willow11

By the way this all started with a bad concussion (50lb metal sign falling on head) when I was 65 and am now 70.

Jump to this post

Daaam

I have. Massive family history of arthroscopic calcification from impaired cholesterol processing. My Dad died of MI at age 38. My son is on statins. I am on statins. My brother has had double by pass. So it’s not a bit surprise that small vessels are subject to same issues.

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pb50 | @pb50 | Mar 18 7:25pm

Just to point it out - there are two types of brain matter - grey matter and under that, white matter. That’s true for everyone.

Here’s a good link from Pub Med that speaks to white matter disease that may be helpful.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3201847/#:~:text=“Gray%20matter”%20is%20only%20one,outside%20the%20context%20of%20pathology.
REPLY
red79 | @red79 | Mar 19 11:02am
In reply to @pb50 "@red79 @willow11 - can’t tell which of you asked which question. My recent brain CT for..." + (show)
@pb50

@red79 @willow11 - can’t tell which of you asked which question. My recent brain CT for MCI says

Preserved brain volume for age. Mild chronic small vessel ischemia in the cerebral white matter

From what I understand it is like a lot
Of conditions - can be a bfd, or can be managed -‘depending on things like how diffuse it is when you discover it, whether you have diabetes, high Blood Pressure, if you are smoking still, etc.

It could be from trauma or it could be from coming of age in the 70’s 🙄
Could be because you’ve let things like weight and health slide too long (guilty!). Or it could be a combination of all those things. But it sounds like there are treatment strategies to arrest progression to varying degrees.

I’m sure mayo has some good articles as well but here’s a good one From Cleveland Clinic.

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

Jump to this post

Thanks pb50,the information is really helpful.how are you.

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1 reply
pb50 | @pb50 | Mar 19 12:16pm
In reply to @red79 "Thanks pb50,the information is really helpful.how are you." + (show)
@red79

Thanks pb50,the information is really helpful.how are you.

Jump to this post

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. 🙄

REPLY
3 replies
red79 | @red79 | Mar 19 1:39pm
In reply to @pb50 "By all measures I’m doing fine. I am waiting for the 28th to get a read..." + (show)
@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. 🙄

Jump to this post

do you mind me asking how long you were on waiting list neurologist.

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1 reply
willow11 | @willow11 | Mar 19 3:15pm
In reply to @pb50 "By all measures I’m doing fine. I am waiting for the 28th to get a read..." + (show)
@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. 🙄

Jump to this post

Dear pb50,
I have had PCS for a long time (7 years). But I have had a sense of humor since I was born. After I disclose that I have PCS if I sense any awkwardness in the conversation, or if I say something that is not quite right, I smile broadly and say “Sorry Brain Damage”! That usually gets them laughing and the conversation can continue. Hopefully if you can accept it and move on, that gets them to accept it and move on. It has worked for all of my friends and new acquaintances and when they smile hopefully, you and hopefully they can move on with the conversations.
Good Luck! Let us know if it works for you.

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