White Brain Matter Disease - Treatment Options and Clinical Trials

Welcome @gchanscomcast, Do you have White Brain Matter Disease and are you looking for treatments or clinical trials?

Yes

I guess I have white matter disease. I had a Lucunar Stroke last year. I was told that that was in the center of my brain in the white matter. I have high cholesterol and I am being treated for it now. My blood pressure was OK I am a little overweight and 70 years old. Those are risk factors. There is also a history of stroke and my family. This happened to you right now but I’m still pretty freaked out about it. Would just like to share my fears and other feelings about it. Anybody out there?

I was just diagnosed this week and I'm very afraid. I'm not quite 60 and started noticing problems with memory, balance, ability to complete tasks and blurry vision about a year ago.

Welcome @rengirl, The unknown can be very scary when you have a new diagnosis like white brain matter disease. I'm hoping @eczarniecki can share with you and help provide some answers for you. Did your doctor suggest or start any treatments?

I have been taking Choline and Piracetam daily for about three months. Looking for a way to arrest this disease and this has helped me with my cognitive decline.

Pirecetam certainly increases blood flow to the brain and some studies are promising. I am not a doctor and only offer this as something worth exploring.

Better than doing nothing.

Welcome @narus, Thanks for sharing the information about piracetam. @awilst has also posted about it in another discussion and may have some additional information. I also ran across the following article yesterday and thought it may be interesting if not helpful.

— Micronutrients May Be a Unique Weapon Against the Neurotoxic Triad of Excitotoxicity, Oxidative Stress and Neuroinflammation: A Perspective:
https://www.frontiersin.org/articles/10.3389/fnins.2021.726457/full

Have you done any research on supplements that may be helpful?

sorry my knowledge is limited & am looking for more info.

________________________________________

In May of this year my husband lost sight in his left eye. He saw an eye doctor who immediately admitted him for MRI's and other test. The Neuro-ophthalmologist and MRI detected a swollen optic nerve. It was treated with steroids' and antibiotics. They did a spinal tap also.
After 5 days in the hospital there was only the diagnosis of the swollen optic nerve. No known reason for this.
The MRI also reveals what they call "White Matter Disease." We don't understand this other than it means a mass on the brain in spots.
Recently he now has double vision and the left eye does not move to look in the left direction. Another MRI shows the white matter has increased somewhat.
I don't know what to expect next. He also has weakness in the legs, balance issues and hearing loss. All of his medical conditions are controlled with medication.
Does anyone have experience with White Matter Disease?

My husband was diagnosed with White Brain Disease over a year ago at the Cleo Roberts Center outside of Phoenix, AZ. I had become concerned way back in 2012 and made the appointment for him there. IF this is the same thing you're dealing with, my understanding is that it has to do with deterioration of the myelin sheath in the brain. Per Cleveland Clinic, the myelin sheath is a protective membrane that wraps around part of certain nerve cells. Myelin affects how fast signals travel through those nerve cells. It's called White Brain Disease as it shows up white on scans. It can go on for decades and in my husband's case affects executive functions but if you met him you wouldn't realize he had a problem. I had worked with seniors my entire life and owned a group home - never heard this term before he was diagnosed.