White Matter Disease

my name is Eugene Mangum I am a gulf war veteran with chronic severe headaches have too passed out on
several occasions over the years, VA has continuously over 30 years until my last scan in 2022 while I am now.
61 years about to be 62. I also had an ischemic attack 20 years ago; I had a fellow female soldier. friend who
was told just as I was it non-significant. not to scare but it the fact I thought you should know. if you can and have recourses do find the right neuroscientist who will help, my friend is gone and i just pray we find help keep each other posted… all the same symptoms the paralysis, headaches, twitching., passing out.,etc..

laylasmom,

I am 66 and was diagnosed with white matter disease ( chronic microvascular ischemic disease) a few years ago. Did you actually see your MRI or just the narrative? Did it identify the locations of the lesions? Based on the location of the lesions you may be able to identify the areas of the brain affected and their corresponding functions. Also, in my case, the same process that causes the white matter disease can cause lacunar strokes. While these are usually asymptomatic (silent strokes) the effects can be cumulative. You might want to ask your doctor if your MRI also shows evidence of these.

It is important to identify whether you have ischemic disease or demyelination. If you have the former then there is no treatment but lifestyle changes may slow the progression. If it is the latter then it could be MS which does have drugs available to help manage the disease.

Try to keep from stressing out and enjoy life to the fullest (I know, easier said than done). You never know what's around the bend. Do as much as you can for as long as you can. Don't miss out on life, whatever the diagnosis, you may have many years to work on that bucket list.

Your story sounds a lot like mine. I am 63 now, but at 49 I blacked out in my bathroom and fell, hitting my head on the sink going down. My husband took me to the ER (it wasn't the first time I'd blacked out) and a CT scan showed something, so I had an MRI. The radiologist and ER doctor said it looked like I had MS/Multiple Sclerosis, as the significant number of white matter lesions in my brain appeared to form perpendicular lines (a sign of MS). My PC (primary care) doctor sent me to a neurologist the next day, and after examining me, he said for the number of lesions in my brain, he was surprised I could walk without support. I am not all that coordinated, but I can walk fine…most of the time. That was the first time I heard "CADASIL," as the neuro said it was possible I had it, but it was rare and genetic, so my family would've known about it. I knew none of us had heard of it. I had a spinal tap and other tests that ruled out MS. The local neurologist sent me to Denver, Colorado (I live in Wyoming) to see the MS specialist there, who after an exam said I needed to be tested for CADASIL, and we arranged for a blood draw for that and a number of other conditions diagnosed from DNA. After a nerve-wracking 3-month wait, my husband and I went back to the specialist, who broke the news I had indeed tested positive for CADASIL. We were devastated and numb.

laylasmom @laylasmom: Have you heard of CADASIL? If not, you can go to: cureCADASIL.org and get more information.

Hi Keith
Thanks for the above info. I plan to see a neurologist to go over my CAT and MRI scans. I get tired of doctors just sending me information related to tests and do not actually have me in their office to discuss. This time I’m going to be more proactive! Arlene

I had been having severe headaches, occasional double vision and imbalance issues. I do have a serious knee injury which caused my left left to be shorter after major surgery and titanium rods were inserted.
MRI showed white matter in my brain associated with atherosclerotic vascular problems. I am 83 years old, and physicians seem reluctant to go further in any major studies. In other words, "brain changes occur in persons over 80 and especially if you've had a serious accident.
I also suffer from long Covid – very lethargic, sleeping a lot, compromised immune system. Is there really a support group that connects with physicians that research these unusual signs and symptoms post Covid.
To be honest, I have looked at a few of these comments and I am doing the same – giving a list of complaints. People need more in a support group. Need directions where to go, what studies are being done, etc. I am a retired advanced degree RN and have written to the NIH about this.
Anyone have any additional thoughts would be much appreciated. Faith Lindner (in case this is published, I prefer not to use my whole name)

Addendum: Is there any oversight by Mayo Clinic clinicians on this subject? If not, I feel it would be very beneficial. I am a licensed therapist and RN, and have run support groups for years. But a leader is needed to prevent the group to become a place just to"vent" your symptoms.
There are too many people with these complaints, who need validation and help from the medical community. Thank you.

I am 53 yrs old and was diagnosed with Mild Periventricular and Subcortical Chronic White Matter Disease yesterday. I too have no clue what to do from here and am scared from things I have read online.