Early Onset CAA #12: Diagnosis confusion!
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- Опубліковано 9 вер 2024
- Who the hell really knows anything, amirite? Just when I thought I had been given a miraculous reprieve … the plot thickens. Also, some observations about our healthcare culture.
Check out my other videos for a window inside my experience with (maybe?) early-onset cerebral amyloid angiopathy (CAA), a rare, untreatable & incurable vascular neurodegenerative disease.
Sorry for your situation my wife has just been diagnosed with caa and we are at a loss we live in Michigan and the Drs here have never delt with this and have no clue to help us we are still trying to deal with it. We will pray for you and all the people that have this diagnosis.
Hi, my Dad was diagnosed in 2017 but he didn’t tell his kids. We found out in December 2021 after his 3rd stroke and I made it my mission to see what was going on. After that 3rd stroke he was bad off, unable to live on his own- he would forget to eat, bath, pay us rent. He had gotten so bad with daily living activities- us kids got him a caregiver. Now in 2023 almost 2024 he has a caregiver. He is blurry eyed a lot, urinate on himself at times, he has to have reminders for everything. Just recently - he has started to forget my name. He speaks very little, I believe it’s because he can’t remember.
I am praying for you & praying it’s not CAA. God bless you and thank for you for telling your story. I follow another lady with CAA as well since 2022. God bless
Thank you. I'm so sorry you're having to watch your father go through so much. I know that's terribly painful and can feel like a long, dark road. It's great that he has a caregiver - for your sake as well as his. Be well! 💜
Thank you so much for this video ….my brother who is 78 has recently been diagnosed with CAA……what you are describing (the weird feeling over your head and dull headaches) is what he tells me he is feeling. Re the doctor’s shutting down …yes l’m afraid that’s what he has experienced as well….its as though he is a ‘moaner’. Thank you once again - your video is exceptionally informative. I believe in healing through prayer ….l’ll be praying for a complete restoration of health for you. God bless you!
Thank you. I'm so sorry this is happening to your brother. I hope he is able to find a practitioner who is better equipped to listen and care for him with compassion. ❤️
always nice to see you! sorry to hear about this stressful situation. :( I know what you mean by 'shutting down', havent experienced it from a doctor per se but definitely from auto mechanics. ;) food for thought; confirmation bias, when you have a hammer every problem looks like a nail, etc. sigh. I hope you get some clearer information/insights soon.
Thanks, man. Nice to see you, too!
bout damn time woman!!
So very glad to see that smile again! :)
Thanks, Doc! ❤️
Hi honey - first, you do look great, so good idea to do this video now!! Thanks for updating us - it's so strange, what you are dealing with. We are keeping you close in our hearts and minds. xoxo
XOXO ❤️
Wow, Melissa, how traumatic must that be for you. I hate to think this has happened to you. How on earth can one deal with that info. Stay strong and keep doing your videos. If your like me I started my channel just so I could talk to myself. LOL. Didn't realise there were people out there than needed them. Take Care, Jean
Thanks, Jean.💙 These vids are definitely a form of therapy sometimes! I started this partly so that my daughter and other family would be able to look back later and see what I was experiencing, and also so that I might provide updates to friends more efficiently. Having to explain it repeatedly can be tiring. Have you found that as well?
Hi
Fri 10/20/2023 9am. Melissa, maybe this is why the terminology is of a "Medical Practice"? The Doctors are not ever finished with their learning, they are only "Practicing" their trade on us?
Talk about a medical mystery. Wow. I was struck by your comment about how uncurious docs have been about some of your symptoms. It's like it doesn't register with them if it's not in some book. What do you make of it? (PS - great hair ⭐⭐⭐⭐)
I really don't know. I'm just determined to keep pushing forward with whatever doctors I need to see to figure it out, if that's even possible.
Melissa, my sister has been diagnosed with CAA. She suffered terribly with migraines. She was told the importance of good blood pressure. Since she now has improved her blood pressure she no longer has migraines. I’m wondering if you are also on blood pressure medications. I hope you will see this question and be able to answer my question. Best wishes to you. Debbie
I am so glad that worked for her! Yes, I am also on BP meds. Unfortunately, it doesn't help the migraines much.
Love u so very much
❤️
I am sorry for your situation. My son suffers from headaches on a daily basis and even went to a neurologist.And got an mri. Could you tell me what test confirmed this for you?
Please forgive me. I didn't see your comment until now. My CAA diagnosis came as a result of an MRI that showed evidence of multiple past microbleeds. However, most chronic headaches and migraines don't seem to be caused by anything that serious. It's more likely than not that my migraines are not directly caused by CAA . I just happen to have several neurological issues that overlap. Medical science still really knows so little about the brain.
I hope your son has a good neurologist and finds some relief soon!
Melissa, we’re you ever able to find a good support group online for people with CAA? My sister is having a real hard time with her CAA. Recently lots of dizziness and vomiting. Have you experienced any of this at any time?
My brother has dizziness and nausea….he has a recent diagnosis of CAA
This is an excellent group moderated by another CAA patient who has become a good friend. I highly recommend it.
facebook.com/groups/374036557981756/?ref=share&mibextid=NSMWBT