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.

Hello -
I’m sorry to hear that your diagnosis is causing distress. I do not know the answers to your questions, however here is a link to to the cerebrovascular/critical care specialists webpage: http://www.mayoclinic.org/neurology/cerebvascgroup.html. You may be able to find some more answers to your questions.

If you are intersted in making an appointment with a Mayo Clinic physician, please click the “Request an Appointment” button on the upper right hand corner of your screen.

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My wife has just been diagnosed with this disease ! I would like to talk to someone who has some experience with this disease

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Hi @gbiffart, and welcome to Mayo Clinic Connect. I’m not finding another member here who has spoken about this disease recently, though it was mentioned by @montanapets a few years ago. I’d like to introduce you to a few other Connect members who are knowledgeable about various brain diseases: @cynaburst , @dawn_giacabazi and @hopeful. Hopefully you can all meet here on this thread.

You might also be interested in our Caregivers group, here: https://connect.mayoclinic.org/group/caregivers/. I’m sure the mentor in that group, @IndianaScott, would love to meet you on this site, as well.

Welcome to the community! Have you considered getting a second opinion for your wife at Mayo Clinic?

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@gbiffart

My wife has just been diagnosed with this disease ! I would like to talk to someone who has some experience with this disease

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@gbiffart Cranial Amyloid Angioplasty I suspect you mean “Cerebral Amyloid Angiopathy” I could not find anything on “Cranial Amyloid Angioplasty”, but there is lots on Cerebral Amyloid Angiopathy if you Google it. I say this because it is a part of my Primary Familial Systemic AL Amyloidosis in the cerebral cortex. This runs in my family. Actually, there are a bunch of us that have it. It is an amorphous (without shape) deposit of dead proteins in the brain. It is built up over many years. Usually it starts as a single cell, and it could begin long before birth. Then it divides, and divides again and begins to conquer. By the time one is in their 50’s or later, the deposit in the cortex (it is like Alzheimers, but in a different part of the brain) is noticeable on CT. It is a form of Amyloidosis. (see http://www.amyloidosis.org). I leads to dementia, and is always fatal if one lives long enough. This form makes little fibrils, tubes filled with water, which get between the cells of the body, and particularly the cells of the nerves and the artery walls, interrupting the flow of electrical signals. And for @lisalucier, I suspect you might find others under Cerebral Amyloid Angiopathy. There are many centers who deal with this, including Mayo-MN, Brigham and Women’s, Stanford, etc. And my own story and situation is posted free at : https://bit.Ly/1w7j4j8 Free, and as accurate as possible.

Liked by Solo Act

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@gbiffart

My wife has just been diagnosed with this disease ! I would like to talk to someone who has some experience with this disease

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Hi Thanks for your reply and correction!I should have used Cerebral!My wife is almost 78 She has had a few smaller bleeds over the last few years and 2 larger bleeds in the last 3 months after which she has been diagnosed with the disease.Any idea of what the future might hold from your past experience with your family??

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@gbiffart

My wife has just been diagnosed with this disease ! I would like to talk to someone who has some experience with this disease

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@gbiffart Hi, friend. Glad I could help a little. By the way, I am 77. I bleed a lot, so just know that this is part of the pattern. Most of mine is haematurine, but I also bleed in various other places. Small drops which just bleed under the skin are petechiae, which leave little red or purple spots under the skin. I am getting them all over my body now. So did the others. Dementia is about the same as Alzheimer’s. Peripheral neuropathy is the same. The stuff is probably Gelsolin or Cystatin-C Amyloidosis, but get May or B&W or Stanford or another strong center to do the diagnosis. It is not enough to have your local center dX, unless your local center is Mayo-Rochester. The fibrils get into the sensori-motor nerves, just like they do into the brain. The cornea begins to appear from the inside like looking through rippling waters. Usually these waves are vertical. Reading becomes difficult. This is, so far, always fatal, but at 77 or 78, not too surprising, although some centers are working on clinical trials that might extend and improve life a few months. Be sure to have the regular checks for LCDD (sFLC, 24 hr urine, etc.) The big thing is to learn to manage this monster. Read the stuff from Mayo and others. The best are the videos (grand rounds) from Mayo, B&W, Stanford, etc. Especially the “What you need to know”, etc. Martha Grogan and Angela Dispenzieri may be the best. Do get on to http://www.amyloidosis.org. Well, that is enough for now.
Hang in there. It is tough, but you and your wife gotta fight together.

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Hi My wife has had a number of brain bleeds our Neurologist has no doubt from the MRI results her bleeds are only cranial and the Amyloid deposits are apparent I can’t find any one with the same thing they’re also telling us there is nothing that can be done Thanks for the offer of help
Blessings

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Well, it is difficult to find others with the bleeds and deposits, stemming from Cystatin C or Gelsolin. As for the rest, two years ago it was probably true that nothing could be done. At this moment, however, I think I would start with Morey Gertz MD, and Angela Dispenzieri, MD, and Martha Grogan, MD at Mayo-Minnesota, Dr Landau, or Ralph(?) Commenzo at Memorial Sloan Kettering, or the most experienced at Fred Hutchinson. Just call them. There are at least a dozen or so MDs there that can tell you a lot more than I can. Let me say it another way. If it did not come from Mayo Minnesota, or Boston Brigham & Women’s, or City of Hope or Stanford, or Hutchinson, I would keep looking. When I was young I milked cows by hand. We had one cow who gave milk out of only three spigots. But so help me, I could never remember which one did not provide. I only remembered when she kicked because I grabbed the wrong one. But I did learn I had to keep trying.

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@oldkarl

Well, it is difficult to find others with the bleeds and deposits, stemming from Cystatin C or Gelsolin. As for the rest, two years ago it was probably true that nothing could be done. At this moment, however, I think I would start with Morey Gertz MD, and Angela Dispenzieri, MD, and Martha Grogan, MD at Mayo-Minnesota, Dr Landau, or Ralph(?) Commenzo at Memorial Sloan Kettering, or the most experienced at Fred Hutchinson. Just call them. There are at least a dozen or so MDs there that can tell you a lot more than I can. Let me say it another way. If it did not come from Mayo Minnesota, or Boston Brigham & Women’s, or City of Hope or Stanford, or Hutchinson, I would keep looking. When I was young I milked cows by hand. We had one cow who gave milk out of only three spigots. But so help me, I could never remember which one did not provide. I only remembered when she kicked because I grabbed the wrong one. But I did learn I had to keep trying.

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Is there someone in particular whom you recommend at Fred Hutchinson, in Seattle, @oldkarl?

You have been kind, generous, and courageous with your information and your coping with this disease and prognosis. Thank you.

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Wondering whether you still check this group and how you’re doing, @montanapets?

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@oldkarl

Well, it is difficult to find others with the bleeds and deposits, stemming from Cystatin C or Gelsolin. As for the rest, two years ago it was probably true that nothing could be done. At this moment, however, I think I would start with Morey Gertz MD, and Angela Dispenzieri, MD, and Martha Grogan, MD at Mayo-Minnesota, Dr Landau, or Ralph(?) Commenzo at Memorial Sloan Kettering, or the most experienced at Fred Hutchinson. Just call them. There are at least a dozen or so MDs there that can tell you a lot more than I can. Let me say it another way. If it did not come from Mayo Minnesota, or Boston Brigham & Women’s, or City of Hope or Stanford, or Hutchinson, I would keep looking. When I was young I milked cows by hand. We had one cow who gave milk out of only three spigots. But so help me, I could never remember which one did not provide. I only remembered when she kicked because I grabbed the wrong one. But I did learn I had to keep trying.

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@soloact Hi, Solo! No, I have no one in mind at Hitchinson. There is one possibility, though. I may do it myself, although it would be a good thing for you to become familiar with the process. Go to AmyloidosisFoundation.org, or just Amyloidosis.org. They have a column for the support groups around the country. One of these groups meets twice each year in Seattle at Hutchinson, and meets twice each year at OHSU in Portland. They just met, about a month ago, in Seattle. I believe Morey Gertz from Mayo-MN. They should mention the organizing people. I hope to make the next meeting, which should be in Portland in January or February. My doctor, Farnoush Abar of Corvallis, will probably be one of the speakers. I wish I had known about Amy sooner. One of my good friends died of it a few months ago and was never diagnosed because her doctor had no idea. I just talked with her husband yesterday, and learned the truth.

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@oldkarl

Well, it is difficult to find others with the bleeds and deposits, stemming from Cystatin C or Gelsolin. As for the rest, two years ago it was probably true that nothing could be done. At this moment, however, I think I would start with Morey Gertz MD, and Angela Dispenzieri, MD, and Martha Grogan, MD at Mayo-Minnesota, Dr Landau, or Ralph(?) Commenzo at Memorial Sloan Kettering, or the most experienced at Fred Hutchinson. Just call them. There are at least a dozen or so MDs there that can tell you a lot more than I can. Let me say it another way. If it did not come from Mayo Minnesota, or Boston Brigham & Women’s, or City of Hope or Stanford, or Hutchinson, I would keep looking. When I was young I milked cows by hand. We had one cow who gave milk out of only three spigots. But so help me, I could never remember which one did not provide. I only remembered when she kicked because I grabbed the wrong one. But I did learn I had to keep trying.

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Why is knowing about it sooner an advantage if there’s no treatment, no cure? I would think the dread would offset any benefits from support groups?

You know that Fred Hutchinson is a cancer center, right? This isn’t a form of cancer, from what I’ve read so far? But I understand what you’re saying: Even if they merely hosted the event, who was involved and speaking would be great leads. I don’t know that I have it, but I’m in an area where medical care isn’t so great, our only neurologist is fresh out of med school and seems like she’s 15 in mannerisms, and some of my recent test results make me concerned.

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@oldkarl

Well, it is difficult to find others with the bleeds and deposits, stemming from Cystatin C or Gelsolin. As for the rest, two years ago it was probably true that nothing could be done. At this moment, however, I think I would start with Morey Gertz MD, and Angela Dispenzieri, MD, and Martha Grogan, MD at Mayo-Minnesota, Dr Landau, or Ralph(?) Commenzo at Memorial Sloan Kettering, or the most experienced at Fred Hutchinson. Just call them. There are at least a dozen or so MDs there that can tell you a lot more than I can. Let me say it another way. If it did not come from Mayo Minnesota, or Boston Brigham & Women’s, or City of Hope or Stanford, or Hutchinson, I would keep looking. When I was young I milked cows by hand. We had one cow who gave milk out of only three spigots. But so help me, I could never remember which one did not provide. I only remembered when she kicked because I grabbed the wrong one. But I did learn I had to keep trying.

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@soloact I surely know what you are speaking of. I am 100 miles from a hematologist and neurologist (Yachats). My Renal guru says that since my GFR is normal, everything else is fine. Mayo says a high GFR after a low GFR is a sign of progressing disorder. Not good. My local is a PA, but very caring, if uneducated. And knowing about this sooner is an advantage now because there is treatment, and it gets better all the time. I expect to see some much more efficient meds go to the FDA for approval before the end of the year, and available for you and me within 4-6 months.We need to be ready.

Liked by Solo Act

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@gbiffart

My wife has just been diagnosed with this disease ! I would like to talk to someone who has some experience with this disease

Jump to this post

My mother was diagnosed with Cerebral Amyloid Angiopathy in 2008 at the Mayo Clinic. She has had a few more minor bleeds since that have affected her sight, walking and cognitive thinking over the years. Usually a lot of rest helps to get her back to her new normal. There have been challenges, but nothing as bad as we once feared. She has been in Assisted Living since 2014. She is now 81 years old and overall, as I said, with keeping the blood pressure low, good food and exercise (had both knees replaced separately over a year ago) she is doing remarkably well.

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@gbiffart

My wife has just been diagnosed with this disease ! I would like to talk to someone who has some experience with this disease

Jump to this post

Hi Thanks for the information.My wife is 78 and doing remarkably well since her first 2bleeds
Good to hear that this can give us hope for a few more years
Blessings
Jerry Biff

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