Cerebral amyloid angiopathy

So sorry to hear your story, and definitely understand sometimes feeling overwhelmed. My husband was diagnosed with CAA in 2017 after having 2 episodes of numbness in his right arm; MRI showed small bleeds and other changes. Those episodes lasted 20 to 30 minutes and continued off and on for 6 months, then stopped. He had been having some cognitive issues before, most noticeable was the loss of his previously perfect directional sense. He was/is otherwise is great health, and we basically decided to forget about it till we needed to worry. We had almost 5 good years with no other symptoms, but in 2021 he had a major bleed (stroke) affecting his left side -- some difficult complications kept him in and out of hospital for a few months. He now uses wheelchair, walker, cane, depending on the circumstances. His being able to walk some is a great help, as he's able to go to the bathroom unassisted, etc. Cognition continues to get worse, but many people don't even notice. But he doesn't have the concentration to read anything more than a page or two and he can't do numbers at all, which was his prior specialty, never looks at his computer and even has trouble with the phone. He is now 81 and his physicals show him still in excellent health -- lucklily no heart or blood pressure or any other issues -- only thing wrong with him is CAA. I still work part time so we have a caregiver M-F from 11 to 5, which is a lifesaver for me. Trying not to worry about the future and missing the active life we had before are the hardest things for me. I find reading comments by others really helps me remember we are not alone.

Went to @gbiffart link for her story and it has been deleted.

Can you please share what thing scan be done to slow the progression sown and the activities that could be helpful.

Diagnosed with brain micro vascular brain disease. Can not get an answer if it can can affect vision. I am 71 years old and diabetic. Had cataract surgery the past January. Noticed recently having difficulties with night vision and constantly feel light headed. Neurologist does not know what is causing it?

I had a hemorrhagic stroke in November of 2023. I am exceptionally fortunate to have a neurologist in the family. I had 3 Tia’s prior to this stroke. My nephew suggested CAA to me. He also suggested I hook up with a stroke neurologist but to not mention what my nephew had said. The stroke neurologist said exactly what my nephew said. From what I understand there are some clinical studies but apparently they have not had good outcomes yet, according to my stroke neurologist.
My neurologist thinks I potentially have 1-2 decades left in me. I am 65 now. I do vestibular PT on my own every day and walk 3 miles a day using my walker. It was such an out of left field diagnosis that I was terrified in the beginning. Now I try not to think about it and do what I can to feel somewhat human.
Good luck!
Jim

I am a lung cancer patient on Tegrisso, targeted therapy. Because of this I get a MRI brain scan every 6 months . Six months ago the scan was normal. The results of the December scan showed multiple cerebral microbleeds and amyloid places. Not much information was given and I am seeking advice.

@nellie1 - I imagine you're nervous being told you have cerebral microbleeds and amyloid in places. And I'm sure it's a huge surprise that this scan that was normal not long ago now is showing something different.

In my experience dealing with serious medical matters, I've found it scary to read testing or scan results before meeting with the doctor (though I do it anyhow), especially because radiologic and lab results can be full of jargon.

I'd like to tag some members who may have knowledge or experience from their own lives or the lives of a loved one related to getting information about findings of cerebral microbleeds and amyloid, including @catherinep52 @zerodas @tcainaru @trishannabanana @happypappy2.

nellie1 - Do you have an in-person appointment or phone call scheduled with your doctor to discuss the scan's results? What would you say are your biggest concerns right now?

My conc e rn is the diagnosis of mictovascular brain disease. What does the future hold for me? Will it get worse

Mictovascular ischemic disease and Cerebral Amyloid Angiopathy are different (I think). CAA causes microbleeds but many people have no other symptoms. The doctors say to just live your life! There was a webinar about CAA on 11/23/24 that is now on youtube that is very helpful - especially the beginning presentation by Dr. Steven Greenberg.

I have an in-person with my Oncologist next month as well as a first Neurology video conference. My biggest concern is becoming slowly incompetent and helpless. The lung cancer was a complete surprise and now this. I am feeling overwhelmed.