I've just been diagnosed with white matter disease. Anybody else have it?

I understand it's related to MS.

I never heard of it but looked it up and yes close to MS they are saying. If it were me and all I've learned in my life headed to 79, I would eliminate all the white foods as you possibly can. I truly believe grape seed extract, a class of OPC's, does wonders and I've been taking it for going on 23 yrs... It crosses the blood brain barrier. You can find info on grape seed extract and the brain and nerves.

My sister just passed last Dec after her battle with MS and how I tried to help her, but she didn't hear me, but did all the pharma drugs. She was 68, very sad.

I am not a doctor and only put out info that I believe COULD help others. Always discuss with your own doctors.

Hi PAYNE1,

Saying you have a white matter disease doesn't indicate what disease or condition is being referred to. Please speak with your Dr. for more clarification as to what is meant by White Matter Disease.

Take care!

Yes, I understand there are a variety of "white matter" diseases. But that's all I was told.

PAYNE1, do you have any specific signs or symptoms which led your doctor to suspect White Matter Disease and what clinical investigations did s/he carry out?

The information here might help you to ask your doctor informed questions White Matter Disease: Causes, Symptoms, Treatment.

I was having bladder incontinence followed by retention; numbness and tingling in my legs, arms, feet, and hands; feeling of muscle contractions in legs, muscle jerking from time to time; trouble with balance; and trouble with memory and general thinking processes.

I had an MRI of the spine and of the brain. And EMGs of one leg and one arm.

Does that sound right? I am 62.

Do you have the MRI report and if you do could you put up what it says in the impression section? Your EMG, was it normal or did it show a problem?

Yes, I've been diagnosed with this, too, in Feb 2017. I was complaing to GP about progressive symptoms of what I've read about MS. My GP said because I am male and 77 years old I cannot have MS. Was sent to MRI of my brain.
Results showed I've had 3 mini-strokes in the micro blood vessels in the White Matter, 2 in the right side and 1 in the left side. My GP dismissed it as normal even with my progressively debilitating leg muscle pain and weakness. I managed to see a neurologist. He said is was White Matter Disease but did not indicate there was more then 1 kind of White Matter disease. It wasn't until I read in this forum that White Matter disease is more of a overall term covering several different brain problems including MS. No wonder what I am feeling matches the list of symptoms for MS I find online.

Since the brain MRI in Feb 2017, I have experience more come and go symptoms such as shaky handwriting, left eye peripheral blindness, much more balance inabilities and extreme fatigue and extreme inability to focus and concentrate.

This time I am waiting to be scheduled for a Cat Scan (not another MRI because the doc didn't know if medicare would pay for another MRI withibng a year time period). I don't know of a Cat Scan will be able to see anything. And nothing was ordered for my scan. I've had diabetes for over 25 years and high BP varies between 120 and 150. So the docs are using a Diabetic Nephropathy diagnosis because, I believe, it is an easy cop-out.

But I do feel vindicated to learn that MS is related to White Matter disease and my symptoms are't just made up.

Larry Kramm

My husband was diagnose with white matter disease about 6 years ago. It wasn't too bad until this year, his forgetfulness is so frustrating for me along with other things. I've been falling apart all year cause I don't know how to deal with what's happening to him. How does one deal with the frustration?

Welcome to NeuroTalk though I am sorry that it is in such hard circumstances.

Are there any support groups for the partners of people with white matter disease that you can look to for support?

With care.