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.

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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.

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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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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

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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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Hi Good to hear from different people I thought my wife would die soon as she had 2 bleeds back to back.Hearing from others I understand that this doesn’t take her life immediately which gives me a clearer picture.We have had some wonderful times of being together and trust we can have more.I realize that later on this may be difficult but for now we are OK

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sorry i don't have any answer, but maybe you can help my wife was told of the same problem just 2 days ago info seems to be hard to find thanks from oconomowoc wisconsin

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@prochef1967

sorry i don't have any answer, but maybe you can help my wife was told of the same problem just 2 days ago info seems to be hard to find thanks from oconomowoc wisconsin

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Just to let you know it sounded like an imminent death sentence,but it seems like it can go on for a while.I heard from another lady that
her mother had 2 bleeds in 2008 and now at 81 has moved into a nursing home.Has your wife mostly returned to normal?My wife seems to be doing fine and then she has a small bleed I think?and gets a little confused but slowly comes back to almost normal.

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@prochef1967

sorry i don't have any answer, but maybe you can help my wife was told of the same problem just 2 days ago info seems to be hard to find thanks from oconomowoc wisconsin

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Welcome to Connect, @prochef1967
It can be a shock to receive a diagnosis of cerebral amyloid angiopathy, but as @gbiffart said, it progresses slowly. I'd also like to invite @sistertwo and @dino54 into this discussion to share their experiences.

Prochef1967, Do you have family near by to help support you and your wife?

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@prochef1967

sorry i don't have any answer, but maybe you can help my wife was told of the same problem just 2 days ago info seems to be hard to find thanks from oconomowoc wisconsin

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is far as i know my wife has no evidence of bleeds only the small clots in place .this is brand new and i've yet to visit with her doc

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