White Brain Matter Disease - Treatment Options and Clinical Trials

I have not gotten formal dx yet but will soon I think from neurologist. Im a social worker and am well versed in psych meds. Seroquel is a powerful antipsychotic and can really knock you out and make you a zombie. Not sure why she’s prescribed this (schizophrenia, bipolar? Extreme anger?) while she may have WMD, sounds like it may have progressed to dementia. She needs to see a dementia specialist. I’m not sure where the closest major medical Ctr is but I would try there — and try to see if neurologist there has experience with WMD. Hopefully they could run the appropriate tests and initiate treatment— most important is lifestyle. There may be meds that help. She shouldn’t be alone, both for safety and lack of social engagement. Some combination of friends, family, church folks and certified nursing assistant.

Awaiting final diagnosis from ms specialist (is it MS?) recent MRI shows increased size number of white matter lesions since last MRI 2020. Based on my research and common sense, there are other things that can help besides bp and cholesterol control. Though that’s important. Exercise (!), lots of social and intellectual engagement, Mediterranean diet, reduce stress (ha), treat mental health issues — depression is common with WMD, sleep, hobbies. I’ve recently had a lot of falls balance issues and developed orthostatic hypotension/ syncope don’t know if it’s due to WMD, but I’m going to ask about PT and general fitness routine, I always feel better across the board when I walk. Need to get back at it. From my understanding, WMD is due to lack of blood flow to smallest nerves in the brain, getting the brain active should increase blood flow and oxygen. All of these recommendations are used to prevent, delay or slow dementia. WMD increases risk for dementia so it’s wise to follow. And whether or not WMD progresses, these things will help your brain. I did read a study that WMD can be halted or possibly reversed doing what I mentioned above. Sorry don’t have the cite for that.

Unfortunately there is just not a lot of info yet about WMD or specialists.

Meant to say Seroquel could be causing her symptoms.

Thanks, klucey. I'm afraid we have reached the point of no return and the end is near. But thanks for answering me.

I believe the basis for this is small vessel disease/endothelial dysfunction. Exercise is certainly vital. Stick to a good exercise program; get the help of a physical therapist if possible. Absolutely get your lipids under control and make sure you do not have a glucose intolerance/insulin resistance issue. Up to 40 percent of all idiopathic (unexplained) cases of PN are ultimately tracked to a sugar issue. These sugar issues can fly under the radar. At least get a 2 hour glucose test after fasting. If you have an open-minded physician, have him or her review the niacin data, some of which shows that it has very favorable effects on axonal remyelination, endothelial dysfunction, etc. A couple studies that supposedly showed it was not effective for lipid modultion went contrary to 19 clinical trials involving tens of thousand of people across several decades and used niacin in an entirely wrong and deficient matter. Two researchers involved in those studies themselves refuted their own studies' negative niacin findings in a two part series that was published in a peer reviewed journal. A recent study that raised alarms about a single niacin associated factor that in isolation caused some inflammation proves nothing negative about niacin itself. You can isolate molecules from almost anything that in isolation and in high enough doses are toxic.

How does one become a part of the study of new
treatments of WMD?

Has anyone seen any informaon about activating stem cells to treat white cell disease? I recently heard about an X39 patch to activate dormant stem cells, but I don"t know any more than that.

My husband had a scan done "periventricular and subcortical white matter hypodensities are likely on the basis of microangiopathic change. ...Impression: moderate brain atrophy appropriate for age with leukoaraiosis" Is there a treatment for this? He is having short term memory issues. We need help - scared.

@janabelleca From what you’re written it seems that your husband has some changes in white matter. White matter in the brain are the connections - pathways, and neurons - that connect one part of the brain to another. There can be different reasons for “leukoaraiosis” (white matter changes” and this is something that needs more investigation in order to figure out the treatment options. Has your husband seen a neurologist who specializes in memory? Is this why the CT scan (or MRI?) was ordered?

With short term memory problems it’s best to see a neurologist who specializes in memory. Your husband should also have cognitive testing performed and this is often done through a Memory Diagnostic Center.

What tests and information have you received so far other than what you wrote here?

The scan was ordered by our family Dr. He has had bloodwork (his thyroid was low so they adjusted his meds) / urinalysis, ECG (resting heart rate was 42), a 24 Hour Holter Monitor (results not back), 2 memory tests scored 28 out of 30 on 1 and missed 1 answer on the other one. He has not seen a Neurologist yet, appointment in November.
What other testing should be done? or what other testing would be done at Mayo? And then what? What kinds of treatment options are there? Is this a hopeless thing or are there things to be done?