MRI post stroke: encephalamalacia

My daughter has encephalomalacia and very high inflammatory markers: white blood cells, platelets, CRP, and sed rate. She's also diagnosed with thrombocytosis and high cholesterol.

She was diagnosed with (severe) autism and intellectual disability at 9 months old. She has had the on-going inflammation her entire life. No doctor ever told us her blood work wasn't normal. We didn't find out until 2019, when she was 15. We had to fight for additional testing. She has lesions in her GI tract and intense BM issues thar went from extreme constipation for years to frequent bowel incontinence and green stool earlier this year (February). She has eczema. And she has a large area of brain damage in her left parietal lobe with bordering areas of gliosis, which says to me ongoing damage. 😡

I have finally demanded whole genome testing for her, as the medical community does not communicate with each other, even in situations as serious as hers. We don't have results yet, but it's going to show pathogenic variants for systemic vasculitis. Why? I have them. Along with a 5 cm ascending aortic aneurysm and cavernous malformations and small hemorrhages visible on my brain MRI.

My inflammation shows as elevated complement proteins and cytokines. My CRP and sed rate are fine. I have atopic dermatitis (related to eczema) and GI and brain issues, too. My sister has psoriatic arthritis mutilans (Her feet are deformed now.), which is also an MHC-I-opathy. MHC = major histamine complex. A lot of autoinflammaory disorders are genetically related. They occur on the same genes and are frequently comorbid. Atopic dermatitis, eczema, IBS, Crohn's, psoriasis, and Behçet's - which is likely what I have. My eyes are now going bad, too.

Oh, and my paternal grandfather died early from a stroke. Heart disease for my maternal grandmother.

I'm not sure how high the mountain of evidence has to get before doctors will assist because none of this - for myself or for my daughter - is being treated. My aneurysm is watched annually.

It sounds like you are in the same boat. Has anyone tried to connect your brain and CNS issues with your cardiac ones? Have you had any genetic testing for vasculitis? What does your CBC, CRP, and ESR (sed rate) look like?

You've got to put it all together yourself, I'm afraid. They won't.

I'd like to be on Humira or something, so my body would stop attacking itself. That's the goal. I'd like it for my daughter, too.

I really wish you luck with all of this. It's stressful and it's so much work. I try to remember to make time for little, joyful things. I'm sure you are very busy, too. But we need time for people we enjoy (not people we feel obligated to see), hobbies that take us away from it all (reading, theater, concerts, stadium sports, whatever), and just moments of peaceful rest, noticing and appreciating the comfort and tranquility.

Hi, my husband’s MRI one year out from 2 strokes 9 days apart, in 2021, show encephalomalacia , aka atrophy, in the cerebellar region. Since 2018, he has had an MI, 4 strokes, 2 of which are cerebellar, 1 basal ganglia, 1 frontal lobe, and MRIs showing ongoing chronic subcortical lacunar “silent” strokes. The cerebellar strokes left him with 3PD, daily dizziness, but minimal residual physical symptoms. His MRIs and CTs indicate white matter disease, aka small vessel disease, aka microvasular ischemic disease. All are cardiovascular and due to the mechanisms that result in arteriosclerosis. SO, he also had PAD and Stage 3 Kidney Disease. He does well so far on most neuropsychological tests for “memory” but has the expectant slower executive functioning (slower thoughts and problem solving, trouble focusing and with sequential tasks). His tests show MCI but his symptoms of gait change( wide stance and shuffling) and inconsistent bouts of urinary and bowel incontinence, restless sleep, time management challenges, increasing OCD indicate the expected progression. I have learned that you will rarely get a definitive “dementia” diagnosis, but the neurologist clarified “ cognitive impairment” becomes “dementia” when our loved one can no longer complete ADLs (activities of daily living) and needs assistance. Hope this helps.