White Brain Matter Disease - Treatment Options and Clinical Trials

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.

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?

Isn't this MS?

MS was never mentioned. If I recall correctly, they said that we all get some of this, but his showed more than would be expected at his age.

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?

How old is your husband? Mine is 79

Hello @cclaus and welcome to Mayo Clinic Connect. Hearing this diagnosis has to be concerning and, no doubt, comes with a lot of questions. I am glad you have reached out for support here.

You will notice that I have moved your post into an existing discussion on the same condition so that you can more easily connect with others in the community. You can now find your post here:
- White Brain Matter Disease - Treatment Options and Clinical Trials: https://connect.mayoclinic.org/discussion/white-brain-matter-disease/

I see members such as @ldrlaw and @naturegirl5 have joined you already. I'd also like to call in members @narus and @awilst who have experience with this condition.

Are you scheduled for a follow up with Neurology and/or Cardiovascular like you had mentioned?

Would like to become a participant.