White Brain Matter Disease - Treatment Options and Clinical Trials

Welcome @dizzydiane, I wasn't sure if you saw my response following the post by @zoetise. Here is a link to my response - https://connect.mayoclinic.org/comment/626778/.

Are you looking for a specific clinical trial?

It seems like no one in Texas has ever even heard of this disease.

So, ARE there any treatments or trials going on for this disease? My friend is 71 and has had this for several years now and no one here has even diagnosed her with it or any other disease. Her father had white brain matter disease and her psychiatrist has her on Seroquel but her husband has now taken over raising and lowering the dosage depending on how she's doing! She is alone 2 or 3 days a week and just wanders the neighborhood. She falls a lot, she can barely speak or do small things like use a phone or open a car door. I can find her no help in North Texas.

I had an MRI because off partial hearing loss, 50% in RT ear and 20% LFT e ear, I was told I had a small amount of White Flares d it was associated with old age and cognitative dcline and normal for my age.(84)!!!!and no need to do anything! I also have nueropathy in both feet, varcrose veins,(wear pressure stockings)Charley Horse Cramps in both legs but mostly lft leg. Sore muscles in lft arm...am prediabetic,and stage 3 CKD which I control with diet. I had a bone scan and was told that the designations only go to 70yrs so I am probably ok. I am unsteady a bit in open spaces so use a cane sometimes, my BP is quite low sometimes....90/60 85/58....so I boost it by drinking strong coffee. Recently had cataract op on lft. Eye and that seems okay, I guess..need my eyes as I am a painter with an exhibition coming up in March. But Iam very pissed off to be told that there really is nothing to be done as it is just my age. I dont want to find out down the road that if I had done this or the other simple thing I could have avoided this or that medical situation. I don't like being told we'll wait until it gets worse before doing something....your kidneys will get betterby the selves!!!I.have almost given up going to docters ...my deceased husband was a doctor and lived until 91....I think he would be shocked. So I am stumbling a long, taking note of how he took care of himself and listening to what seems rational ...and doing what I can to maintain good health so I can keep painting. Sorry this is so long...thank you for listening..feel better for "outgrabeing indespair". Take care and walk in peace with Mother Earth

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Yes.

My neurologist is an MS specialist and he’s been running lots of tests to see if my symptoms are that. MRI not pointing to that. -/ instead increase in size and number of white. Matter lesions and intensities compared to 2018 and 2020. Have increased balance issues, dev orthostatic hypotension, syncope, executive dysfunction and some memory issues. High cholesterol and labile blood pressure. Long standing depression and ridiculously stressful couple of years,Soon to sign up with fitness program as exercise seems to be the most effective. Also social and intellectual engagement. I would love to find other treatments

What exercises are you doing?

This is not helpful at all! Based on my research on wmd and dementia there are things that really help: exercise. Pt for balance, medditarean diet, social and intellectual engagement, reduce stress, control bp and high school, treat depression. I’m slowly trying to create a life based on these. It would be great though for more targeted drug or other brain therapeutics.

I have a lot of health conditions including more white matter lesions than someone for my age (61). Based on concern for higher risk of dementia. I’ve researched brain health which helps body. Mediterranean diet, exercise (Im going to get PT for balance falls), social/intellectual engagement, treat bp, cholesterol, mood/anxiety, nature, hobbies.