White Matter Disease?
 

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?

I just have a copy of the MRI at this point. No notes. The EMGs were normal. I might be able to get some notes tomorrow, though--or at least request them.

I got a copy of the report today. I don't know whether to be happy or sad. Yes, I have white matter disease, but the doc considers my scan to be "normal," given my age. What? 62? :(

Hi PAYNE1.

Do you have the MRI report on the spine MRI?

Although MRI reports are not a diagnosis they can give possibilities for the findings in the impression section. However, it's always best to receive an understanding of your MRIs from your Dr.

Although 62 isn't old it is possible and normal to have changes in the brain as we age :(

No, I don't have the spine report. Thanks for reminding me to get it.

I've been diagosed with this, too
 

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

Needing some support
 

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.

Too much crying
 

That's what I'm trying to find is a support group but so far all I've found are websites that help those with a disease. Lately he's been losing things and we end up searching high and low for them cause he can't remember what he did with them. Later on I end up crying. He has some stuff going on that I'm not sure if it's related to his disease or not. Would be nice to find other people going through this so I can ask them and get the support I need. I'm tired of all the crying I've been doing lately.

We have a Caregiver forum - A place for people who are a caregiver to another to find help and support.-
https://www.neurotalk.org/forum56/

Some senior centers or home care services ( Home Instead, has group meetings..), maybe your local hospital may have a resources list or know of places for support groups.

Thanks for the help

It's rather complex. With the exact diagnosis and term, ask those website owners of they know of any support organisations. However, a number of things can also contribute to things, which might increase dysfunction. I'm not saying he will have any of these, but, of he does it could help. A lot of dysfunction comes along before it's permanent. The "broken glass" look in the MRI causes dysfunction before it gets more permanent. Stopping that just might help a lot. With me it restored significant dysfunction but I had additional issues, that treated, helped me from forgetting everything all the time, and brought up my cognitive function again.

Here are some other things that affect white matter or memory

- Genetic and age related problems dealing with, or recycling (genetic, active form of the vitamin), the vitamin b12. The genetic problem is unlikely, but older people have an issue absorbing B12. But, if the problem is recycling B12 to its activd methylated form, taking B12 won't get checked converted to the active form.

- pyrolia. This is a condition where a component of the blood binds to zinc and takes it out the body. There are three of do different nutrients involved. Zinc at the wriong dosage is neurotic, so find a health practitioner competent in this is important.

- ME/Chronic Fatigue is associated with demyelination. A health care provider that specislises in treatment. Research indicates part viral cells in cells affecting cellular waste clearing and mitochondrial ATP energy production. There are a series of nutrients that help too. ME is associated with nutrient malabsorption and gut issues. Store bought probiotic tablets tend not to be very week compared to natural fermented foods.

- Autism Spectrum Disorder is associated with demyelination. A health care provider that specislises in treatment. There are a series of nutrients that help too. It is associated with nutrient malabsorption too, and gut issues. Store bought probiotic tablets tend not to be very week compared to natural fermented foods. Digestive enzymes is something else a health professional may cover.

- Lyme's/tick born disease (associated with white matter disease from pathogen from ticks or other insects. If so, see a descent Lyme's specialist. Who might put one onto one of the two salt and vitamin C protocols).

-parasites. Some people affected more, and older people. Harbour pathogens, changing the biochemistry of the body, and modern research indicates strong links with various diseases, and some mental illnesses. This is only a very early feild, that practitioners haven't been educated in (it can take a decade or more for practitioners to catch up with research in general practice).

Not many are competent with the last two above, lack insight into the deep complexities, and imagine things instead.

A these things require health care practitioners competent in them. A lot of misconceptions and outdated understandings, exists with them. So, a good practitioner, who has taken time to investigate these things, in order to properly treat them to the utmost efficacy, is desirable. There are a number out there, who just want to push an opinion.