Cerebral amyloid angiopathy

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.

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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

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?

@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.

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??

@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.

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

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.

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.

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