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.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

Justin McClanahan, Moderator | @JustinMcClanahan | Feb 13 12:23pm

In reply to @willow11 "What is White Matter Disease on my MRI?" + (show)

Hello @willow11. I moved your discussion and combined it with an existing discussion titled "White Matter Disease," - https://connect.mayoclinic.org/discussion/white-matter-disease-1/.

I did this so you could meet other members with white matter disease, like @SusanEllen66, @nogrits, and @keithl56.

@willow11, Have you had a chance to discuss your MRI results with your provider since seeing this finding?

willow11 | @willow11 | Feb 13 12:57pm

In reply to @JustinMcClanahan "Hello @willow11. I moved your discussion and combined it with an existing discussion titled "White Matter..." + (show)

No, it is a result of a Workers Compensation Case and the insurance company limits my access to the Doctors. I can’t make make appts with my questions. They are just rushing me to WC court. All I know I found on line about football players who were denied compensations which heightens my fears, I will be cast aside to deal with this on my one with only the internet for information.

keithl56 | @keithl56 | Feb 13 1:22pm

In reply to @willow11 "No, it is a result of a Workers Compensation Case and the insurance company limits my..." + (show)

Sorry to hear of your situation. I have white matter disease as well. It is usually caused by plaque build-up in the very small arteries in your brain. This causes a lack of blood flow to a small area of the brain and results in death of the brain cells that have no blood supply. It sounds scarier than it is but since most of the time it pretty much asymptomatic you don't even realize that it is happening. Over time you may develop symptoms as more areas are affected, and the symptoms can vary based on what area of your brain is involved. Your MRI report may state where the white matter disease is and you can do some research. Was the MRI recommended because of some specific symptoms you are experiencing?

This probably has no bearing on your WC claim since white matter disease doesn't have any causes that would be employment related. If you are symptomatic there may be a possible disabilty claim unrelated to the WC case.

Good luck! Feel free to reach out with any questions and I'll try my best to help you out.

Keith

xede | @xede | Feb 14 8:42am

In reply to @willow11 "What is White Matter Disease on my MRI?" + (show)

Just had the same result. I am 70 years old and asked for the MRI as I am losing words and short term memory is an issue. My Doctor says it is age related and "don't worry about it"? Not an acceptable answer as the onset was quite sudden.

xede | @xede | Feb 14 8:45am

In reply to @keithl56 "Sorry to hear of your situation. I have white matter disease as well. It is usually..." + (show)

Apologies Keith, replied to the post before reading your response. May I have your thoughts on an obvious decline in memory and white matter disease shown on MRI?

keithl56 | @keithl56 | Feb 14 10:47am

In reply to @xede "Apologies Keith, replied to the post before reading your response. May I have your thoughts on..." + (show)

Hi Xede,

Most of us lose some of our cognitive ability to some extent as we age. Some degree of white matter disease is likely to show up on an MRI of any older individual. However, if a change in symptoms is sudden and substantial then I would think that it would concerning. Sometimes you can have a lacunar stroke (I've had several), and while they can be asymptomatic they can result in sudden onset of symptoms. They are the result of the same microvascular ischemia that cause white matter disease. However, an MRI would identify these separate from the areas of white matter disease.

If you had an MRI and the doctor said not to worry about it then don't worry about (easier said than done, I know). He must think that the degree of white matter disease is age appropriate.

Since there is no treatment for white matter disease you can't dwell on it. Just live a healthy lifestyle and enjoy life to the fullest. Getting older is not fun!

Feel free to reach out if you think that I can help.

Keith

xede | @xede | Feb 14 11:31am

Appreciate your thoughts Keith.

Yup, not easy this aging thing!

Kind regards

narus | @narus | Mar 7 9:08am

I was diagnosed with White Matter Disease when I had a MRI because of abnormal gait after prostate cancer treatment. Only thing I have read about that might help is a supplement called Piracetam which is supposed to increase blood flow to the brain.

keithl56 | @keithl56 | Mar 8 7:35am

In reply to @narus "I was diagnosed with White Matter Disease when I had a MRI because of abnormal gait..." + (show)

Piracetam is not FDA approved as a drug or supplement. Most people with white matter disease are already on some type of blood thinner (even aspirin) and there are contraindications to not combine piracetam with blood thinners due to possible bleeding problems. I would recommend that anyone considering taking any kind of supplement to discuss it with their physician.

I have a neurologist appointment next Tuesday and will pass on any words of wisdom from him.

narus | @narus | Mar 8 1:20pm

In reply to @keithl56 "Piracetam is not FDA approved as a drug or supplement. Most people with white matter disease..." + (show)

I have taken Piractam for over two years and have found it helps me and thought I would share my experience. Piracetam has been a prescription drug used to treat Dementia in Europe ,Russia and Japan. Piacetam is not a blood thinner but you should use caution if taking anticoagulants but is fine to take with a daily dose of aspirin.
I would recommend before criticizing someone else comments that you take the time to research what you are talking about.