Cerebral amyloid angiopathy

@colleenyoung I haven't found anybody who will review records & give an opinion. Spoke to Mayo In MN, couldn't get past the scheduler. We are seeing the local neuro opthalmologist Monday & then the local neurologist (for the 1st time!) May 29th. I did hear back from Dr Steven Greenberg's office & got the names of some doctors at UNC, Duke, UVA, Emory & Vanderbilt who might see us & give us an opinion. However, I reviewed all their publications online & only 1 of them looks like he might be versed in anything like CAA. Saw husband's GP Monday & he said the local neurologist is good, so I think we will just wait until we've seen him & see what he says & then get up with one of the referrals. As to how husband is doing...good days & not so good days, vision loss seems pretty much the same, memory & mental processing vary day to day, but do seem a little better overall, his spirits are good, mine not so much. Not knowing how bad he is, what to expect or a prognosis is hard for me to deal with. Maybe we'll learn something from the two dr appts this month. Thanks for asking about us...it does get lonely out here & family is getting tired of hearing this stuff....I think we all just want to stick our heads in the sand...it's been a rough 4 years. My older brother was diagnosed with Parkinson's in June 2012, but choked before he could meet with the doctors to discuss treatment & we had to fly to Denver to take him off life support; my mom (90) came to live here after he passed away, is under my care, & had 2 takotsubo syndrome attacks & has had several other hospitalizations for heart problems & a broken ankle; my daughter (36 & 2 small children) was diagnosed with DCIS breast cancer & had to have a double mastectomy in Dec 2016 & now my husband's stroke. Needless to say, we came into this emotionally wiped out & I'm just tired of trauma...I just want some peace of mind from somebody. Anyway, enough of my whining...thanks for the ear & for asking, though I'm sure that's more than you wanted to hear. We'll make it...you do what you have to do & then keep on doing...right? When I hear something from somebody, I'll be sure to let you know...right now it's just more waiting. 🙁

I was diagnosed with CAA in May of 2027 at Mayo in Rochester, MN. Simply post or send me a private message, if you need to talk with me about my illness.

Suggest you select a doc from the referral from Greenberg and get on the schedule. You can always cancel. They are very busy so sooner is better.

Dr. Yuan at U penn, in the group referred by Greenberg. She c9nfirmed probable CAA dx based on MRI and symptoms. I asked if mild, moderate, or severe, and she said moderate due to 3 neutological events in 30 days. Walked through the MRI with me and I saw about a dozen small dark dots around cortex (CAA) plus bright white spot in the speech region which depicted my temporary speech loss march 16. She modified my INR levels (coumadin), took me off one baby aspirin/day, ordered an Echo ahead of my local cardiologist appt next week, and is concerned that I may be experiencing afib again. Suggested I work with local cardio doc to determine if Watchman device might be helpful. I liked her very much. If anyone in the Mid Atlantic or otherwise wants her contact info let me know.

Thanks for posting about your visit. Really sorry to hear your diagnosis confirmed, but it sounds like she's a good doctor. Wishing you all the best in this journey...take care.

Hello @nonipoppy I appreciate the update on your husband. I am so sorry to hear of the multiple losses and stressors you have experienced in your family. It does get overwhelming, doesn't it?

I hope that your husband's upcoming appointments go well and you get an understanding of what to expect down the road. As you see the specialists you might ask specifically about cognitive therapy and speech therapy. These are very valuable tools in recovery, however, often doctor's won't always prescribe them unless they are requested specifically.

I look forward to hearing from you again.

Teresa

@nonipoppy that is a lot to handle. I can imagine you are emotionally worn out. I'm glad to hear that you have appointments with local specialists and that your GP says the neurologist is good. If the neurologist doesn't have expertise with CAA, he may be able to make a referral to Mayo Clinic or one of the other doctors that were recommended to you. I'm hoping that your local specialists have the expertise you need. It's comforting and easier to be close to home.

Do stay in touch. It can help to vent when the load feels to much to bear alone. While I can't physically lighten the load, sometimes it can help to know that people are listening.

This is more than most people experience in a life time not over just a few years. I learned a valuable lesson 2 years ago when my favorite aunt had kidney problems, and her GP referred her to a nephrologist in my home town of Knoxville, TN. That particular doc was not avail for over 8 weeks. None of our family knew this was going on, and by the time my aunt got to the nephrologist her kidney function was single digits and she immediately was on dialysis til she died less than 2 yrs later. Had we known, we would have searched for an alternative in Knoxville, Nashville, Chattanooga, Atlanta and perhaps have made a difference. I am now relentless in searching for alternatives for my own care, and becoming much more aggressive in a nice southern charm way with schedulers and doc assistants that I speak with. I have gotten appointments with PA's and NP's just to get into the practice. I encourage all to be bold and creative for yourself or your loved one in the medical maze in which we find ourselves.

My mom was diagnosed there 10 years ago, and overall is still doing quite well. When she has had more bleeds, we can usually get her back to her new normal with a lot of rest for 2-3 weeks. Some of her cognitive thinking is off, but in other areas, she can articulate things almost better than before. She is losing more control of bathroom needs, especially at night, and requires a lot of supervision. She loves to travel and rarely do people realize that she has any side affects, other than virtually no use of her left hand. Best of luck to you.

Thanks for the report good to hear that the small bleeds don't completely take away all the functions of a person at once!