Cerebral amyloid angiopathy

Hi, @coloradogirl - that is hard having a lot of unknowns about the potential progression with your mother-in-law's recent diagnosis of cerebral amyloid angiopathy. I am confident that some of the members in this discussion will return and offer some insights on how the disease might unfold. Please meet @bortner @johnbishop @nonipoppy @gbiffart @surf362 @thomaslmason @sistertwo. If you've not already clicked on VIEW & REPLY in your email notification, you may wish to do so to read through the entire previous discussion on this topic.

You talked about lobbying for speech / cognitive therapy services. Is the lobbying right now with her insurance?

Hello @coloradogirl -- Have you tried Google Scholar (https://scholar.google.com/)? I am able to find a lot of medical research type information that can be helpful. Here's one that might provide some of the information you are looking for:

Abstract WP426: Cerebral Amyloid Angiopathy-related Inflammation: Immunosuppressive Treatment and Outcome
-- https://www.ahajournals.org/doi/abs/10.1161/str.50.suppl_1.WP426

Here is a list of the links I found using the search phrase "cerebral amyloid angiopathy +treatment" without the quotes.
-- https://scholar.google.com/scholar?as_ylo=2019&q=cerebral+amyloid+angiopathy+%2Btreatment&hl=en&as_sdt=0,24

@bortner @nonipoppy @gbiffart @surf362 @thomaslmason @sistertwo @coloradogirl -- I thought I would check and see how you are doing and find out if there have been any changes that you are able to share with other members. I found an interesting recent article that I thought you might want to see.

A challenging diagnosis of reversible “vascular” dementia: Cerebral amyloid angiopathy-related inflammation (January 2020)
-- https://www.sciencedirect.com/science/article/pii/S016557281930517X

Are you able to share any updates on your condition?

About 4 years ago I was going through the references in known symptoms of anything when my local clinic diagnosed a deposit of protein cells in my cerebrum. Amorphous, without its own shape. It just seemed to fill in wherever there was some vacant space. (No smart remarks, now!) Since then I have repeatedly shown regular Hades spells, about once every six weeks, when I seem to show many symptoms of stroke. I have been in the hospital about ten times, sometimes by ambulance, for these symptoms. Anyway, I suspect it is CAA, but the doctors refuse to diagnose it, They offer all manner of excuses for the "White Matter Protein Invasion". Alzheimers, Round-Up, radiation, DDT, 2-4-5T, Diabetes, ...... . One doc told me a couple days ago "Maybe it is coronavirus." Another said I might just be doomed to have a stroke every few weeks for the rest of my life. I am only 80, for Pete's sake. Mayo only said it was not TTR, but they could not rule out Amyloidosis Light Chain of some sort such as Gelsolin, Lect2, Carnitine, etc., unless I gave them more money to do it, about $4,000. I told them I would keep the money and take my wife and great-grandkids (all 18 of them) out to dinner. Then if I die next week, I will have a good memory to enjoy through eternity. WHEEEE! Finally, ALL my symptoms point to two diagnosed and one undiagnosed DNA disorders: RYR2, Fukuyama Limb Girdle Muscular Dystrophy and Gelsolin. Well, and maybe Apolipoprotein. All of these exist in my current generation blood kin.

My wife has recently been diagnosed with CAA although we have known for some time that there was something wrong that resulted in her processing issues. She is post-polio and there is some research to suggest that cognitive processing might be impacted by that. She also has processing issues in her family history so it is not surprising that she might experience similar problems.

We are quite comfortable with our local neurologist but he does not have much experience with CAA. He indicated that he was unaware of any treatment available for CAA. Web searching doesn't yield much in the way of encouragement either. I am wondering if a trip to Mayo or some other facility would be of benefit. Does anyone have experience with such facilities and would suggest that we might be well served by them? We feel as though we are groping in the dark, but it is a darkness that others have shared as well.

Any suggestions? Thank you.

Jim (and Gail)-Bluffton, SC

Hello @jamestitus and welcome to Mayo Connect.

How wonderful that you are advocating on behalf of your wife. If you are interested in finding out if Mayo offers treatment for this disorder I recommend that you call one of Mayo's three facilities and ask about an appointment. They will let you know if they have a doctor who can see her. Here is information regarding appointments at Mayo, http://mayocl.in/1mtmR63.

Here is a link to research activities at Mayo regarding this disorder, https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/research-highlights-in-neurology-and-neurosurgery-may-2018/mac-20463935

How is your wife feeling now? What are her most uncomfortable symptoms?

When my mother was diagnosed by Dr Rabinstein (MN Mayo) with CAA we found his knowledge extremely helpful and encouraging. There are things you can do to slow the progression down and some activities that could be helpful. Wishing your wife and you the very best.

@sistertwo Thank you for sharing from your own personal experience. That can be a great encouragement to people who feel in the dark! How did your mother get along with Dr. Rabinstein's suggestions?

Thanks for your reply, Sister Two. I think that I will get in touch with Mayo (MN) and see where that takes us. I appreciate your support.

Wishing you the best.