Cerebral amyloid angiopathy

Posted by montanapets @montanapets, Dec 14, 2011

I was having an MRI to work up onset of headaches, 3 wks. duration and this was seen on the MRI. I'm an RN and scared out of my mind that I'm going to have a stroke. I'm not reading anything online that sounds like anyone can do anything. Is there any reason to go to Mayo? Might I still live a long life? Is there any chance the MRI was read incorrectly? I'm having a hard time here with all this.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

@colleenyoung

@nicolehf, I'm so sorry to hear about your Dad and your loss.

I can understand your concerns about the hereditary nature of dementia and cerebral amyloid angiopathy. Sometimes there is a genetic risk factor, but not in all cases. As you said, you can't live in fear, but you can equip yourself with knowledge. It is possible to find out your Dad's exact diagnosis? If you knew that there is a genetic risk factor, would you live your life differently?

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I have a question about amyloid angiopathy. I have been having a bad headache for the last few days and then on monday I had an incident. I was driving home which was only about 3 miles and in a neighborhood that I've lived in for 30 years. I was driving down the street heading for the street to turn and i couldn't figure out where to turn. I knew the street should be there but I couldn't figure where it was or even what the name was. Is it possible this could be caused by this disease-bleeding in the brain?

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I am no expert, but it sure sounds like it to me. My mother also had a problems judging distances. Get a lot of rest and the best of healing to you.

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I was diagnosed in 2010 wit Afib. I was put on an adult aspirin once daily. Then in January2015 I had a brain hemmorage stroke and was diagnosed with cerebral amyloid Angiopathy. I can no longer take any blood thinners of any kind, leaving me in quite a tight spot. I am 67 years old. I understand your concerns and I too have been considering seeing someone at Mayo who is very familiar with CAA.

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@nanatessie

I have a question about amyloid angiopathy. I have been having a bad headache for the last few days and then on monday I had an incident. I was driving home which was only about 3 miles and in a neighborhood that I've lived in for 30 years. I was driving down the street heading for the street to turn and i couldn't figure out where to turn. I knew the street should be there but I couldn't figure where it was or even what the name was. Is it possible this could be caused by this disease-bleeding in the brain?

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@nanatessie, I wanted to follow-up with your concerning symptoms of disorientation and memory. Did you consult your doctor? Any news?

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@colleenyoung

@nanatessie, I wanted to follow-up with your concerning symptoms of disorientation and memory. Did you consult your doctor? Any news?

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Thank you for checking. I did not check with the doctor because I wanted to see if it happens again. So far it hasn't. I keep having headaches so I'll probably call them next week

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@shedwina

I was diagnosed in 2010 wit Afib. I was put on an adult aspirin once daily. Then in January2015 I had a brain hemmorage stroke and was diagnosed with cerebral amyloid Angiopathy. I can no longer take any blood thinners of any kind, leaving me in quite a tight spot. I am 67 years old. I understand your concerns and I too have been considering seeing someone at Mayo who is very familiar with CAA.

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I also have been diagnosed with caa and am also on coumadin-blood thinner. Because I had a valve replacement in 2000, I don't have the option of coming of the blood thinner. They keep telling me because of this, it's going to get worse. But I have no choice. I am 69 yrs old. I'm sorry you're going through this

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I've been diagnosed with Cerebral Amyloid Angiopathy. It's a rare brain disease for which there is no treatment. I am looking for someone who also has it whom I can share thoughts with.

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@trishannabanana

I've been diagnosed with Cerebral Amyloid Angiopathy. It's a rare brain disease for which there is no treatment. I am looking for someone who also has it whom I can share thoughts with.

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@trishannabanana, you'll find discussions about cerebral amyloid angiopathy here in the Stroke & Cerebrovascular Diseases group (https://connect.mayoclinic.org/group/cerebrovascular-diseases/). I moved your message to this long running discussion about CAA here:
– Cerebral amyloid angiopathy: https://connect.mayoclinic.org/discussion/cerebral-amyloid-angiopathy/

I did this so you can connect more easily with fellow CAA members like @nanatessie @cbenson524 @surf362 @sistertwo @shedwina @jkrysman @sphillips1952 @oldkarl and more.

Trishanna, can you share a bit more about you? When and how did you learn of your diagnosis? How are you doing today and what do you find challenging?

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