Do you have heds this wiuld cause both

Me cfs 27 years fybromyalgia 7 highly eelated to autism adhd heds which ime now diagnosed rccx theory father has cfs to

I have fybromyalgia i get these symptoms but oaun 24/7 normal mri clear

Melissa, we know our bodies. Prayers 🙏 for you and your loved ones.

Hi, I watched this video as I'm not sure yet what I have, looking for signs and symptoms online on KZbin. I've been going to the doctor, and finally going to get an MRI scan on my brain. Newly subscribed to be able to follow your journey, to support you and my journey too. Not sure how this will go, but you seemed like a lovely neighbour, as I'll think of it, if you need to vent, breakdown, or want to hang out online we can uplift each other. But I'll keep it short because typing for me is too much, or I'll go on camera if need. Thanks for the video you've done well considering. You will draw strength from your husband and daughter.

So good to see your post and learn about your new insights. Stay strong my friend.

so DAMN nice ta see yer face in the place again!

MECFS. Please define that again.

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?

I have this.. I can relate. I feel your pain.

How many shots did you take???

Hi

Sounds like build up of beta anyloid proteins inside the vains that causes small hemorrages.

What are the 4 B/P med you take ?

Melissa, I just found your channel. I am sorry you got that harsh diagnosis. There are lots of us with neurological issues feel free to reach out if only for a bit of support.

Take care

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.

Thank you for sharing your experiences in these videos having been diagnosed with CAA. I never heard of the condition until my father recently was released from ICU in Miami, FL and diagnosed with CAA.

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!

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?

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

Hi Melissa! This video popped up on our KZbin a few days ago and my husband and I watched it, plus all your other videos about this illness. I have it too. I was diagnosed in March of this year. I had never heard of this illness before. I have a lot of the same symptoms that you mentioned in the video. There’s several groups on Facebook about this disease. They are very helpful. If you’re interested in joining any of them, I’d be more than happy to share the links with you. I’d love to talk more ❤

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

Love u so very much

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

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?

bout damn time woman!! So very glad to see that smile again! :)

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 ⭐⭐⭐⭐)

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

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.

I saw this quite by chance. I hope you are still well. Although this is 3 months old as I watch you look well. Interesting to hear from another CAA sufferer and also regarding singing. I collapsed nearly 4 years ago with an inflammation on the brain. I live in Munich, Germany so I was able to be taken very fast to ICU at the University neurological hospital and well looked after...just in time as it appeared. After scans, tests and a biopsy the doctors told me I had many micro bleeds and they were unable to locate the main source of bleeding and its wasn't really the CAA they knew of. They said I have a relatively rare version of it for which there was no treatment at all. The general prognosis wasn't good. Four years on I am still working (from home with no stress), and luckily I am still quite sharp. Though there are bad days when I struggle, I have managed to keep busy making art and a lot of music composition in my bedroom studio which I set up to help me though this. I am writing and recording lots of music and pop/rock songs...just for me and it includes singing. I am not really a good singer but I cannot get anyone else to sing. I have discovered what absolute joy singing is! It certainly does make us happy and it's actually had a very positive effect on me. I hope by now you have been able to enjoy singing again. Sorry, this is too long but I just wanted to say..keep going, with music and art as much as your energy allows. They are helping me get through it. You are not alone.

Hello , this is all very interesting to me , as I have capillary loop fragility with a diagnosis of Dermatomyositis since 1991 . I just wanted to pass on a tip to you . I have found something that seems to stop my issues with fragility . I take citrus bioflavonoids daily now . I no longer have to be so careful about touching certain areas on my body , that they would bleed under the skin and they would leave red spots , sometimes large areas would bleed underneath my skin especially my neck and hands and face , wrists too . Yes i tell my doctors that this supplement works . Im not convinced they believe in anything but pharma meds though .

Wish you the best but mostly stay strong!

Thanks for sharing life can change in a blink of an eye it's so sad heartbreaking why good people have 2 go through this not fair sending prayers and love

Thank you for sharing your heartbreak! I’ll be praying for you!

Check out a lady in the UK. She sounds just like you. Says very similar things. She’s looking to connect with people who have CAA. You can find her under, Cerebral Amyloid Angiopathy - Let’s talk

I have the same diagnosis, so want to thank you for sharing your experiences in this format... of a weird disease that is supposed to occur in much older, less healthy people. Thank you(!!@

Promo>SM

thanks so much for sharing.

I have loved getting to see you sing and never knew about your struggles behind any of it. Thank you for sharing - I love you 💕

I love that there were birds singing in this. Thanks for telling your story. I see you.

Congratulations on your one year anniversary! I just celebrated 6 months without significant change, any obvious bleeds or other events. Love your videos. Feels great to see others LIVING with CAA!

belated happy anniversary! Glad you are doing well, Melissa, was wondering how you've been. Looking forward to your sermon, I could definitely do with some Unitarian positivity. ^_^ I've been hanging in, had a dark couple of months there but my creativity finally seems to be kicking in again w/spring, so that's a blessing. Take care! Regards, RW kzbin.info/www/bejne/mKOTqqt5rN17b6M

It is so good to see your beautiful face. I'm thankful they are figuring out your tummy issues. You are an inspiration, my friend! Sending love and light always!

Hi, Melissa. So good to see you. I still am unable to drive but hope to soon. I will keep you posted. You look so good n your video. So excited that you are speaking on April 23! ❤❤❤

I’ve been following your story. My sister has been diagnosed with CAA just this year. She has had several MRIs but has not yet been able to discuss her condition with a neurologist. So far her tests show one bleed. Do you know how many you have had? Can you tell when you are having one? I’m so concerned for her.

kzbin.info/www/bejne/jIO5gX-Ge9R9gpI

Thank you for sharing your journey and bringing to light about this disease. I lost my mom to CAA in 2020 she was 72. I stay active with the FB group and hope for more awareness and a cure. Mom would have wanted that. I will keep you in our prayers.

Melissa Boyack Thank you for sharing your thoughts and how you feel. You are far too young to be affected by this disease 😢💔 My husband was diagnosed at 68. Even though he can talk under water 😂 he never expresses how he feels emotionally. It will be good for him to watch and listen to you talk. 🤗 Thank you

Thank you for sharing your back story I guess my strong beliefs, like yours ce from my exposure when I was young. Thank heavens.my parents did not express racism but certainly had close family that did. I could not ever understand there thinking. It sounds like we are at peace with our friends and feelings with no apologies. That's who you are. Take care until another day.