Thank you for taking the time to record your feelings about your experience with CAA. My nephew is dealing with a brain tumor and he, too, is very young. I admire you for your bravery and your willingness to share your journey. Much love & peaceful vibes to you, Mike, & Casey. 💕
Thank you, Mary. I am so sorry to hear that about your nephew. I hope and pray he's in the best possible hands, medically, and that they're able to successfully treat his tumor. ❤️
Melissa, I have never seen anyone more open and honest as you are in this video. I can't imagine how difficult this diagnosis is to process, and I know these videos will be incredibly beneficial to those with the disease. Thank you for sharing your difficult journey.
Thank you for sharing. I just got my diagnosis today for CAA. I feel overwhelmed to say the least. Things haven't totally registered for me yet. I'm sure in a few days l will not look at life the same.
I understand! Several months into this, I'm still going through different stages of processing it all. I'm happy to connect for a chat, anytime. (Do you use Twitter? I'm @CAAHeadCase)
We are sending all of our love and prayers. Thank you, for your vulnerability. It's been a long time, but we as a family are in your corner and thinking of you. ❤️❤️❤️
Melissa, thank you for sharing your truth with so many. Your authenticity is a generous gift for everyone who sees this and for your family now and in their future. Sending you light for your dark moments and peace for all your moments.
Thank you for sharing , I was diagnosed with this devastating condition of CAA at age 48, now 59….since then, too many micro-bleeds… to count, brain surgery from a large hemorrhage bleed and then a major stroke, learned to walk again., 18 months of chemotherapy that didn’t work. I have a great neurologist who consults with Dr Greenberg (CAA specialist) at Boston Mass to follow his protocol of rituxamab infusions that have been helping control inflammation in the brain. I’ll never feel safe, but it is what it is and we have no control over this monster. Only managing it the best way we can.
I'm so glad you're working with Dr. Greenberg, but I wish you didn't have this at all. (I should mention that my diagnosis has changed quite a bit. If you scroll through some of my responses to other comments, you'll see the details.) In case you're not already aware of it, I highly recommend a Facebook group for CAA patients (link below) that is run by a really lovely friend of mine. You'll find so much support, community, and good information. facebook.com/groups/374036557981756/?ref=share&mibextid=NSMWBT
Melissa, I discovered your channel only today via Facebook. Know that I will follow your journey as long and as much as you are willing to share it. All my love to you…
I'm honored to be your social media friend, Melissa, even though we've never met in person. Thank you for this gift of deeply meaningful sharing. It will be a beautiful blessing to your family members present and future, your friends, and all the rest of us who are inspired by your courage. Sending love.
Thank you!! My sister just had her second stroke because of CAA. I am starting to feel the effects of similar things. I just turned 62 . Her first stroke was at 60 and now 68. I had 4 &4 of each sibling. 2 brothers have passed one of accident and the other of a brain aneurysms . I’ve just sent away for his autopsy report. Apparently, this runs in siblings😢. It is 5:02am and I just found you. Sleep evades me now, so I started looking again. There must be “something” that helps this awe full future!! Then I found you! I’m in Liverpool, NY! We are virtually neighbors!! Going to see if you have recorded more.❤
I've recorded quite a bit more - though, as I discuss in some later videos, my CAA diagnosis is now highly questionable. Because my scans only showed CMBs and no other markers, Dr Greenberg at first thought I did not have CAA. He walked that back a bit when a follow-up MRI showed a couple of new CMBs, suggesting that they may be progressing. I'm now in the "possible CAA" category. Most of my doctors and I are now convinced that my outward symptoms are attributable to other causes. Still significant, but not life-threatening. If I have CAA, it could be a long time before it causes its own problems for me. For this reason, I'm not posting that much anymore. The whole ordeal has profoundly impacted me, philosophically and spiritually, and I've learned a whole lot about this disease (and some others). I'm so sorry you are confronted with these challenges. I wish you comfort and all possible healing. ❤
This is the hardest video I have watched and the bravest video I have watched. Dear Melissa I hold you in my heart and give you a virtual hug. I am just so upset about this. I am so so sorry. Much love your way.
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 so much for your kind words. I'm sorry for not replying sooner. I'm usually much better about that but a lot has happened and I didn't quite know what to say for a while. (I'm posting an update shortly.)
I'm so sorry that you're also dealing with CAA. My diagnostic picture has become more complicated over the past couple of years. (Videos #12 & #13 explain further, if you're curious.) I hope you've got good doctors and a strong support system! ❤️
Hi Melissa! This video popped up on our RUclips 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, Trudy! Thanks so much for reaching out. It's so interesting how often I come across other people with similar symptoms, given that they keep telling me they suspect the symptoms are unrelated to the microbleeds. I think there's a need for further investigation across the CAA patient population, perhaps especially in those of us who are younger. You are right about the FB groups, they're so helpful. I belong to a couple of them. I'm sorry we have this in common but would love to chat anytime. Here's my profile link if you'd like to send a note through Messenger. facebook.com/melissa.boyack?mibextid=ZbWKwL 🩵
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
Melissa-thank you for your bravery and thoughtfulness is sharing this journey with your friends and loved ones. While difficult to accept that you have this illness, I want to be as close to you as possible. Living in Florida, it seems this avenue may be the only way I can. ❤🙏
Thank you for so bravely sharing yourself. I’m deeply sorry that you are going through this and keeping you, Mike, and Casey in my prayers. I will reach out to set up some time to visit. 💜 Julie Cusker
Hi, I watched this video as I'm not sure yet what I have, looking for signs and symptoms online on RUclips. 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.
Hi, Debbie. Thank you for your note. My health situation has evolved a good deal since I posted this first video a couple of years ago. The two most recent videos (#12 & #13), which were posted last October and a few days ago, respectively, help explain the new shape of things. Feel free to share any info you'd like with me here! I'll try to share whatever additional resources I might have. When's your MRI?
Mellisa, I am not a very brave/strong person and I had been holding off to reach out to you since your first post on Facebook. I was having such a hard time processing the information-it was like I didn’t want to accept. I finally gathered the strength to watch this video…and I am glad that I did because it truly helped me to acknowledge my own grief on this. Your strength gave me the some strength to hold up, put my own grief aside, and reach out to tell you that I love you…for who you are. And that I want to be with you-in spirit and love, my beautiful friend. ❤️ And, I will come to see you very soon. There was a time, when I had dreamed of becoming your neighbor…dreamed of all the good time that we could have had together. Watched our daughters grow up. My dreams were cut short with everything that happened in my life…but I kept all the love and time we got to spend together. I want you to know -I am here and will always be whenever you feel like you want a friend to talk to.
Melissa I’m so sorry… you’re the last person who deserves to go through something like this. Courtney and I will keep in touch, and hopefully plan a visit soon. Sending all our love to you, friend ❤️
That makes total sense. My whole diagnostic picture has changed a lot since I posted this. Short version: current neuro diagnosis has been knocked down to "asymptomatic possible CAA," and the general consensus is that ME/CFS is my primary diagnosis. I talk about this in one of two of my more recent videos. Now I know more than I wanted to about both conditions. My daughter has fibromyalgia, as well. Mitochondrial dysfunction really, really sucks, doesn't it?
@truerealism747 @akferren1 I've had 3 COVID vaccines, though the timing doesn't match up with symptom onset at all. My diagnosis has changed a lot since I posted this video. My primary diagnosis is now ME/CFS, which is typically a post-viral condition. It is suspected that in a small number of cases this could be influenced by autoimmune reactions to vaccines. It's far more likely to get it after a COVID infection, though. (Long COVID is widely considered to be a type of ME/CFS.) My CMBs are thought to be asymptomatic and may or may not actually indicate CAA. Only time will tell.
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
Yes, I know who you're referring to. She and I have connected a little bit. I apologize for not replying to you sooner. I was going through some changes. (New video will be up soon that explains.)
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.
![BLACK BAG - Official Trailer [HD] - Only in Theaters March 14](http://i.ytimg.com/vi/Du0Xp8WX_7I/mqdefault.jpg)
Thank you for taking the time to record your feelings about your experience with CAA. My nephew is dealing with a brain tumor and he, too, is very young. I admire you for your bravery and your willingness to share your journey. Much love & peaceful vibes to you, Mike, & Casey. 💕
Thank you, Mary. I am so sorry to hear that about your nephew. I hope and pray he's in the best possible hands, medically, and that they're able to successfully treat his tumor. ❤️
Melissa, I have never seen anyone more open and honest as you are in this video. I can't imagine how difficult this diagnosis is to process, and I know these videos will be incredibly beneficial to those with the disease. Thank you for sharing your difficult journey.
What a fucking kick in the ass. I’m grateful for your bravery and openness.
Thank you for sharing. I just got my diagnosis today for CAA. I feel overwhelmed to say the least. Things haven't totally registered for me yet. I'm sure in a few days l will not look at life the same.
I understand! Several months into this, I'm still going through different stages of processing it all. I'm happy to connect for a chat, anytime. (Do you use Twitter? I'm @CAAHeadCase)
We are sending all of our love and prayers. Thank you, for your vulnerability. It's been a long time, but we as a family are in your corner and thinking of you. ❤️❤️❤️
Melissa, thank you for sharing your truth with so many. Your authenticity is a generous gift for everyone who sees this and for your family now and in their future. Sending you light for your dark moments and peace for all your moments.
Thank you for sharing , I was diagnosed with this devastating condition of CAA at age 48, now 59….since then, too many micro-bleeds… to count, brain surgery from a large hemorrhage bleed and then a major stroke, learned to walk again., 18 months of chemotherapy that didn’t work. I have a great neurologist who consults with Dr Greenberg (CAA specialist) at Boston Mass to follow his protocol of rituxamab infusions that have been helping control inflammation in the brain. I’ll never feel safe, but it is what it is and we have no control over this monster. Only managing it the best way we can.
I'm so glad you're working with Dr. Greenberg, but I wish you didn't have this at all. (I should mention that my diagnosis has changed quite a bit. If you scroll through some of my responses to other comments, you'll see the details.)
In case you're not already aware of it, I highly recommend a Facebook group for CAA patients (link below) that is run by a really lovely friend of mine. You'll find so much support, community, and good information.
facebook.com/groups/374036557981756/?ref=share&mibextid=NSMWBT
Melissa, I discovered your channel only today via Facebook. Know that I will follow your journey as long and as much as you are willing to share it. All my love to you…
Wishing only good and healing thoughts for you, Melissa.
Melissa, I salute your bravery. Stay strong and know that we're all pulling for you.
I'm honored to be your social media friend, Melissa, even though we've never met in person. Thank you for this gift of deeply meaningful sharing. It will be a beautiful blessing to your family members present and future, your friends, and all the rest of us who are inspired by your courage. Sending love.
Thank you!! My sister just had her second stroke because of CAA. I am starting to feel the effects of similar things. I just turned 62 . Her first stroke was at 60 and now 68. I had 4 &4 of each sibling. 2 brothers have passed one of accident and the other of a brain aneurysms . I’ve just sent away for his autopsy report. Apparently, this runs in siblings😢.
It is 5:02am and I just found you. Sleep evades me now, so I started looking again. There must be “something” that helps this awe full future!! Then I found you! I’m in Liverpool, NY! We are virtually neighbors!! Going to see if you have recorded more.❤
I've recorded quite a bit more - though, as I discuss in some later videos, my CAA diagnosis is now highly questionable. Because my scans only showed CMBs and no other markers, Dr Greenberg at first thought I did not have CAA. He walked that back a bit when a follow-up MRI showed a couple of new CMBs, suggesting that they may be progressing. I'm now in the "possible CAA" category.
Most of my doctors and I are now convinced that my outward symptoms are attributable to other causes. Still significant, but not life-threatening. If I have CAA, it could be a long time before it causes its own problems for me.
For this reason, I'm not posting that much anymore. The whole ordeal has profoundly impacted me, philosophically and spiritually, and I've learned a whole lot about this disease (and some others). I'm so sorry you are confronted with these challenges. I wish you comfort and all possible healing. ❤
This is the hardest video I have watched and the bravest video I have watched. Dear Melissa I hold you in my heart and give you a virtual hug. I am just so upset about this. I am so so sorry. Much love your way.
I feel the hug, my friend. Sending one right back to you.
Grief is a fucking beast. This is a beautiful thing you are doing 💗
literaly just fell in love with you! your courage and strength (even in these little windows) is an inspiration!
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 so much for your kind words. I'm sorry for not replying sooner. I'm usually much better about that but a lot has happened and I didn't quite know what to say for a while. (I'm posting an update shortly.)
Melissa, we know our bodies. Prayers 🙏 for you and your loved ones.
Thank you for sharing your heartbreak! I’ll be praying for you!
Many thanks. ❤️
Thank you, dear Melissa, for sharing this with us. ♥
I have this.. I can relate. I feel your pain.
I'm so sorry that you're also dealing with CAA. My diagnostic picture has become more complicated over the past couple of years. (Videos #12 & #13 explain further, if you're curious.) I hope you've got good doctors and a strong support system! ❤️
I am so happy to have you in the world. I would love to visit any time. Your essence just shines through.
Wish you the best but mostly stay strong!
Thank you so much.
Sending love.
Hi Melissa! This video popped up on our RUclips 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, Trudy! Thanks so much for reaching out. It's so interesting how often I come across other people with similar symptoms, given that they keep telling me they suspect the symptoms are unrelated to the microbleeds. I think there's a need for further investigation across the CAA patient population, perhaps especially in those of us who are younger.
You are right about the FB groups, they're so helpful. I belong to a couple of them. I'm sorry we have this in common but would love to chat anytime.
Here's my profile link if you'd like to send a note through Messenger.
facebook.com/melissa.boyack?mibextid=ZbWKwL
🩵
God bless you. You are such a brave soul. Thank you for sharing your journey with us and I plan to be right here . 🙏🏾🙏🏾🙏🏾. ❤❤
❤️
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
Melissa-thank you for your bravery and thoughtfulness is sharing this journey with your friends and loved ones. While difficult to accept that you have this illness, I want to be as close to you as possible. Living in Florida, it seems this avenue may be the only way I can. ❤🙏
I love you, Sue. If you ever have plans for a visit this way, please message me!
Thank you for so bravely sharing yourself. I’m deeply sorry that you are going through this and keeping you, Mike, and Casey in my prayers. I will reach out to set up some time to visit. 💜 Julie Cusker
Great video. Thanks for being so open and sharing. This will undoubtably help many people.❤️
Hi, I watched this video as I'm not sure yet what I have, looking for signs and symptoms online on RUclips. 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.
Hi, Debbie. Thank you for your note. My health situation has evolved a good deal since I posted this first video a couple of years ago. The two most recent videos (#12 & #13), which were posted last October and a few days ago, respectively, help explain the new shape of things.
Feel free to share any info you'd like with me here! I'll try to share whatever additional resources I might have. When's your MRI?
You are incredibly brave. Sending prayers and hugs
Mellisa, I am not a very brave/strong person and I had been holding off to reach out to you since your first post on Facebook. I was having such a hard time processing the information-it was like I didn’t want to accept. I finally gathered the strength to watch this video…and I am glad that I did because it truly helped me to acknowledge my own grief on this. Your strength gave me the some strength to hold up, put my own grief aside, and reach out to tell you that I love you…for who you are. And that I want to be with you-in spirit and love, my beautiful friend. ❤️ And, I will come to see you very soon.
There was a time, when I had dreamed of becoming your neighbor…dreamed of all the good time that we could have had together. Watched our daughters grow up. My dreams were cut short with everything that happened in my life…but I kept all the love and time we got to spend together. I want you to know -I am here and will always be whenever you feel like you want a friend to talk to.
Oh, my dear Nivi! I miss you, my friend. You have the kindest, truest heart and spirit. If you are able to visit, it would be wonderful to see you. ❤️
Hi Melissa.. God the Creator of all things has you in his hand. I'm praying with and for you and your family during this journey. ❤️🙏🏾
Sounds like build up of beta anyloid proteins inside the vains that causes small hemorrages.
Yep, that's a good description of CAA.
Sending you love and light. Thank you!! for sharing
Melissa I’m so sorry… you’re the last person who deserves to go through something like this. Courtney and I will keep in touch, and hopefully plan a visit soon. Sending all our love to you, friend ❤️
It would be so awesome to see you two! (Subtle hint: I've really been wishing lately that I could spend time with adorable babies, too.)🙃
@@Db8it oh we can help with that no problem 😉
I love you so much!!! I am in Rochester until Friday and will text you - I would love to stop by for an hour if you feel up to it 💓💓
Take care
I have fybromyalgia i get these symptoms but oaun 24/7 normal mri clear
That makes total sense. My whole diagnostic picture has changed a lot since I posted this. Short version: current neuro diagnosis has been knocked down to "asymptomatic possible CAA," and the general consensus is that ME/CFS is my primary diagnosis. I talk about this in one of two of my more recent videos. Now I know more than I wanted to about both conditions. My daughter has fibromyalgia, as well. Mitochondrial dysfunction really, really sucks, doesn't it?
Wow my brain is damaged woozy bad heads heavy heads tightness depressed anxiety.couldnt do anything after being active before hand
How many shots did you take???
Sorry? Shots of what? I don't remember exactly what I said in this old video. 🙃
@@Db8itvx
@truerealism747 @akferren1
I've had 3 COVID vaccines, though the timing doesn't match up with symptom onset at all. My diagnosis has changed a lot since I posted this video. My primary diagnosis is now ME/CFS, which is typically a post-viral condition. It is suspected that in a small number of cases this could be influenced by autoimmune reactions to vaccines. It's far more likely to get it after a COVID infection, though. (Long COVID is widely considered to be a type of ME/CFS.)
My CMBs are thought to be asymptomatic and may or may not actually indicate CAA. Only time will tell.
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
Yes, I know who you're referring to. She and I have connected a little bit. I apologize for not replying to you sooner. I was going through some changes. (New video will be up soon that explains.)
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.
you are so brave. I sent you a message in Facebook messenger. is that what "DM" means? (remember, I'm old!)