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 19 3:47pm
In reply to @willow11 "Dear pb50, I have had PCS for a long time (7 years). But I have had..." + (show)
@willow11

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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New acronym. PCS?

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2 replies
pb50 | @pb50 | Mar 19 3:48pm
In reply to @pb50 "New acronym. PCS?" + (show)
@pb50

New acronym. PCS?

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I have very much the same approach. But I can tell immediately the ones who are thinking “if she is getting it, should I be worried”?

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willow11 | @willow11 | Mar 19 4:02pm

OK…… How about a giggle, a smile and “Don’t worry….. it is not contagious, but if you might want to be safe how about a See’s Candy chocolate to be sure…….. (Big Smile here…)

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1 reply
willow11 | @willow11 | Mar 19 4:16pm
In reply to @pb50 "New acronym. PCS?" + (show)
@pb50

New acronym. PCS?

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Post Concussion syndrome

I found that going to the Concussion Legacy foundation helped me a lot. There is a lot of information on Concussions that help you understand that you are not alone and has a lot of good advice and articles.

Well,……. they do want you to donate your brain to them, so that their research can continue, but you don’t have too. They ask, because the only way they can evaluate what really happened to you to understand it better and come up with better therapy’s or things to help, is to crack open your skull and look at it. Many people and a lot of them footballers have donated their brain and it is helpful in diagnosing and understand CTE as well as concussions and their impact to hopeful come up with more therapies.

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2 replies
pb50 | @pb50 | Mar 19 4:37pm
In reply to @willow11 "Post Concussion syndrome I found that going to the Concussion Legacy foundation helped me a lot...." + (show)
@willow11

Post Concussion syndrome

I found that going to the Concussion Legacy foundation helped me a lot. There is a lot of information on Concussions that help you understand that you are not alone and has a lot of good advice and articles.

Well,……. they do want you to donate your brain to them, so that their research can continue, but you don’t have too. They ask, because the only way they can evaluate what really happened to you to understand it better and come up with better therapy’s or things to help, is to crack open your skull and look at it. Many people and a lot of them footballers have donated their brain and it is helpful in diagnosing and understand CTE as well as concussions and their impact to hopeful come up with more therapies.

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Well I’ve had concussions from a car wreck that broke my nose and from an elbow to the temple on basketball that clocked me.
But I had not considered those on the context of my MCI - mostly because I have a 3 generations that we have documented of Alzheimer’s. Coming through my mothers maternal line where 80 % of 9 sinlings in my mothers family plus my grandmother and multiple of her siblings and her father and other ones we believe from that generation.
So in the case of ‘if you hear hooves think horses not zebras’ , in my family the horses carry Alzheimer’s - but surprisingly not early onset - tho I’m not completely convinced that’s true.

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pb50 | @pb50 | Mar 19 4:39pm
In reply to @willow11 "OK…… How about a giggle, a smile and “Don’t worry….. it is not contagious, but if..." + (show)
@willow11

OK…… How about a giggle, a smile and “Don’t worry….. it is not contagious, but if you might want to be safe how about a See’s Candy chocolate to be sure…….. (Big Smile here…)

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LOL.

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pb50 | @pb50 | Mar 19 4:40pm
In reply to @willow11 "Post Concussion syndrome I found that going to the Concussion Legacy foundation helped me a lot...." + (show)
@willow11

Post Concussion syndrome

I found that going to the Concussion Legacy foundation helped me a lot. There is a lot of information on Concussions that help you understand that you are not alone and has a lot of good advice and articles.

Well,……. they do want you to donate your brain to them, so that their research can continue, but you don’t have too. They ask, because the only way they can evaluate what really happened to you to understand it better and come up with better therapy’s or things to help, is to crack open your skull and look at it. Many people and a lot of them footballers have donated their brain and it is helpful in diagnosing and understand CTE as well as concussions and their impact to hopeful come up with more therapies.

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I would happily donate my brain to them!!

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pb50 | @pb50 | Mar 19 6:39pm
In reply to @red79 "do you mind me asking how long you were on waiting list neurologist." + (show)
@red79

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

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Red79 I thought I answered you but don’t see it ,
So… it took 6 mos

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red79 | @red79 | Mar 29 6:25am
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. 🙄

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Well I'm forgetting lots of important stuff

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1 reply
pb50 | @pb50 | Mar 29 7:02am
In reply to @red79 "Well I'm forgetting lots of important stuff" + (show)
@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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