My mom was just diagnose with this disease. Thank you for this. I am sending this video to my family so that they can be educated and better understand what is going on with my mom.
What a light in the forest you are! I’ve recently been diagnosed with very similar. It is helpful to share with someone share who knows about this disease! God bless you & your family. You did not say if you are a believer. I pray you are.🙏🥰
Hi Sharon, Thanks for your message. I wish I knew more than I do. There just doesn't seem to be much information out there. Some people seem to find Neurologists that are well informed where others find their Neurologists know nothing. I think finding an understanding person to vent to is very helpful. I cannot give a lot of advice but I will always be here to listen to you.
You are such a sweetheart. My husband is in the process of being diagnosed. It’s such a scary time for us! Watching your video is such a comfort. Thank you!
Not sure if I got back to you but if I didn't I appologise. Hope your family member is managing ok and doing well. Hope their carers are coping well too. Best of luck to you and your family
Hey Jane ~ Just checking in as you requested. We are going to a Cardiologist on Monday as recommended by neurologist for a light-headed-ness symptom and low blood pressure. Not related to neuro issues but may be connected to the nervous system. I'll keep you posted. Please take care. Sheila
Have you seen the ketogenic diet. It's been standard of care for over 100 yrs for epilepsy tha doesn't respond so medication. More recent, all be it, small studies, are showing it to be promising for other neurological conditions including those resulting from plaques. In some instances it increases life span, others not so much, but it always seems to improve quality of life. If you're interested check out 'low carb down under' on UA-cam it's a channel with lots of talks by scientists and doctors in the field but mostly explained for a normal person. A lot of their stuff is about it's use for diabetes (where most of the studies are focusing at present and where it's showing massive success) but there are some talks on the neurological effects. I managed to get if 8 medication for various conditions after accidentally putting myself on the diet due to stomach problem. I saw a marked improvement in my health problems, something I couldn't inexperience so I researched what I had done. 7 yrs later and I'm never going back willingly. Best wishes.
Oh I’m so sorry, this is the second video I’ve watched of yours, and I’m so sorry this is what you’re dealing with. I don’t have a diagnosis like yours, but I was given a diagnosis of a terminal illness. I just got it about 2 weeks ago, and Dr.Google says I’ve got 11/2-5 yrs.it’s so scary. Ive got 2 sons they’re grown, but still I don’t know what to tell them, or more so how to tell them.
I am so sorry to hear this Lynn. It is like, once said cannot be unsaid. I have grown up kids and I have not been able to sit down and tell them what is ahead for me. I think that why give them this burden that I share with my husband now. There will be time for that either a little more down the track or if sooner, when it happens. Because Vascular dementia apparently comes along with CAA, and as I think I might be showing early signs, I have decided that if I get a diagnosis of that then I will sit them both down and tell them then. I agree with "how do you tell your child their mother is going to leave them" I cry often as I can't bare to think about the grief they will go through when it happens. I do not want to leave them all behind. Everyone says go live your life to the fullest....I sometimes wonder if they have ever received a life ending diagnosis . I haven't stopped living yet but boy some days are harder than others. Take care. I am going to get a an email account soon so people can email me direct to chat some. I will put the address on the end of hopefully the next video.
After 2 years of associating numbness rearing its ugly head with my neck problems (numbness began in right hand; then crawled up arm over time and then down right side into buttocks and as far as the knee), I learned via MRI on 09/01/22 that I have CAA. Numbness also was occurring in same fashion on left side. The worst to experience tho, was when numbness on either side would venture into neck and areas of face. Well I got double dipped with it on 08/31/22. Numbness maxed out occurring on both sides and also into whole of head leaving me confused for about an hour. I was told last September of spine problems so it was assumed numbness was from that.. (C4 -C7 in which the nerve root was pressured and other). So on 09/01/22 after much discussion with friends, I went to ER to question whether I had a stroke. They did numerous tests and kept me overnight. Next day at my discharge ALL I WAS TOLD WAS that I had protein lodging in my brain; that it would worsen causing hemorrhage and strokes; and that I needed to see a NEUROLOGIST. I was given paper reports and MRI disc for neurologist and myself. I have since called maxing out on all neurologists in my town and town nearby to schedule appointment. Only 1 available, who said in my turn they will put me on list to schedule. But it will likely be in November OR into new year!! I found that most of the docs did not take my insurance. So I too will begin this diagnosis. I've choose to educate myself this past week by going to library and using their internet, etc. That in itself hasn't led to much found treatment of it. I just had to write you and Thank You. I do so APPLAUD you and your decision to share as you have. You are the ONLY other person I've encountered with symptoms like I have. Others here know of my creepy crawling numbness (lasts 15-45") but we thought it only was cause of my spine. I wonder if others too with CAA diagnosis have existing spine diagnoses as well??? There may be a connection in that. Thank you for you!!! You are such a trouper. Thanks for sharing too!!! I feel the hugest gift a person can give to another is prayer. So May I Say: God guide and direct your treatment and give comfort with healing to you. All things are possible with God. Respectfully and Sincerely, Vivian Bohannon, USA
Hi Vivian. We call that sensation "episodes" over here and they can be terrifying especially when it starts to crawl up the throut. In the hospital I was told not to panic as it is just a sensation and you won't stop breathing. So far they have been correct. Sorry for awfully late reply but suddenly I have started finding so many comments from over a year ago which I have never seen before so not sure if I suddenly clicked a box which lets the comments come through to me. I was told (i never know what really to believe) that when the feelings start on the left hand side then the bleed is on the right side and vice versa. Im not a Dr so I can't tell any one that info is correct. I hope you have had some follow up advice and found a Neurologist who is good for you. Take care and thanks for writing.
I have had two stokes one was six years a go and one end of march one whole side of my body with Numb the first one I had didn’t last long could not talk right now I am on blood pressure pills and blood thinner still have some issues
Hi Mary, Were you diagnosed with Cerebral Amyloid Angiopathy? If so, I must admit I am not up with all the advice about C.A.A but many of us have been told not to take blood thinners due to the fact that when the bleeds occur in the brain, blood thinners will make it more of a danger. Of course, there are other reasons that blood thinners are recommended. I am not a Doctor or any kind of medical professional so check with your Neurologist for confirmation of this. I am sorry to here that you are having to go through this. I hope you are surrounded by caring people to help you through this journey.
Could you please spell out the medicine you mentioned around the 24:20 mark? I have not heard of this. Hoping it might help relieve the symptoms of the spells my husband is having.
Not sure which video you are referring to but I have only had one medication which was to calm my brain and stop the "episodes/seizures" It was called "Epilim" Sodium valproate.
Patrick, so sorry for late reply. I am suddenly finding comments coming through from a year ago and so sorry for lateness. I do hope your Dad is doing well. I guess it has been a hard 9 months for you all one way or another.
My mom was just diagnose with this disease. Thank you for this. I am sending this video to my family so that they can be educated and better understand what is going on with my mom.
Thanks and I hope things are going well for your Mum
What a light in the forest you are! I’ve recently been diagnosed with very similar. It is helpful to share with someone share who knows about this disease! God bless you & your family. You did not say if you are a believer. I pray you are.🙏🥰
Hi Sharon, Thanks for your message. I wish I knew more than I do. There just doesn't seem to be much information out there. Some people seem to find Neurologists that are well informed where others find their Neurologists know nothing. I think finding an understanding person to vent to is very helpful. I cannot give a lot of advice but I will always be here to listen to you.
You are such a sweetheart. My husband is in the process of being diagnosed. It’s such a scary time for us! Watching your video is such a comfort. Thank you!
Hope things are going well for you and your husband.
And a natural source B1 is proving successful in neurological issues, even Parkinson's and MS.
i have a family member that was diagnosed also of this recently,,,,,i feel your pain
Not sure if I got back to you but if I didn't I appologise. Hope your family member is managing ok and doing well. Hope their carers are coping well too. Best of luck to you and your family
Hey Jane ~ Just checking in as you requested. We are going to a Cardiologist on Monday as recommended by neurologist for a light-headed-ness symptom and low blood pressure. Not related to neuro issues but may be connected to the nervous system. I'll keep you posted. Please take care. Sheila
Best of luck to you both
I have a relative diagnosed with CAA. It's very scary when one doesn't initially know what's happening. Good luck!
Isn't that the truth. Hope things are going ok for all of you.
Have you seen the ketogenic diet. It's been standard of care for over 100 yrs for epilepsy tha doesn't respond so medication. More recent, all be it, small studies, are showing it to be promising for other neurological conditions including those resulting from plaques. In some instances it increases life span, others not so much, but it always seems to improve quality of life. If you're interested check out 'low carb down under' on UA-cam it's a channel with lots of talks by scientists and doctors in the field but mostly explained for a normal person. A lot of their stuff is about it's use for diabetes (where most of the studies are focusing at present and where it's showing massive success) but there are some talks on the neurological effects. I managed to get if 8 medication for various conditions after accidentally putting myself on the diet due to stomach problem. I saw a marked improvement in my health problems, something I couldn't inexperience so I researched what I had done. 7 yrs later and I'm never going back willingly. Best wishes.
Thank you. I will have a good look into that. I have heard of it.
Oh I’m so sorry, this is the second video I’ve watched of yours, and I’m so sorry this is what you’re dealing with. I don’t have a diagnosis like yours, but I was given a diagnosis of a terminal illness. I just got it about 2 weeks ago, and Dr.Google says I’ve got 11/2-5 yrs.it’s so scary. Ive got 2 sons they’re grown, but still I don’t know what to tell them, or more so how to tell them.
I am so sorry to hear this Lynn. It is like, once said cannot be unsaid. I have grown up kids and I have not been able to sit down and tell them what is ahead for me. I think that why give them this burden that I share with my husband now. There will be time for that either a little more down the track or if sooner, when it happens. Because Vascular dementia apparently comes along with CAA, and as I think I might be showing early signs, I have decided that if I get a diagnosis of that then I will sit them both down and tell them then.
I agree with "how do you tell your child their mother is going to leave them" I cry often as I can't bare to think about the grief they will go through when it happens. I do not want to leave them all behind. Everyone says go live your life to the fullest....I sometimes wonder if they have ever received a life ending diagnosis . I haven't stopped living yet but boy some days are harder than others.
Take care. I am going to get a an email account soon so people can email me direct to chat some.
I will put the address on the end of hopefully the next video.
After 2 years of associating numbness rearing its ugly head with my neck problems (numbness began in right hand; then crawled up arm over time and then down right side into buttocks and as far as the knee), I learned via MRI on 09/01/22 that I have CAA.
Numbness also was occurring in same fashion on left side. The worst to experience tho, was when numbness on either side would venture into neck and areas of face.
Well I got double dipped with it on 08/31/22. Numbness maxed out occurring on both sides and also into whole of head leaving me confused for about an hour.
I was told last September of spine problems so it was assumed numbness was from that.. (C4 -C7 in which the nerve root was pressured and other).
So on 09/01/22 after much discussion with friends, I went to ER to question whether I had a stroke. They did numerous tests and kept me overnight. Next day at my discharge ALL I WAS TOLD WAS that I had protein lodging in my brain; that it would worsen causing hemorrhage and strokes; and that I needed to see a NEUROLOGIST. I was given paper reports and MRI disc for neurologist and myself.
I have since called maxing out on all neurologists in my town and town nearby to schedule appointment. Only 1 available, who said in my turn they will put me on list to schedule. But it will likely be in November OR into new year!! I found that most of the docs did not take my insurance. So I too will begin this diagnosis. I've choose to educate myself this past week by going to library and using their internet, etc. That in itself hasn't led to much found treatment of it.
I just had to write you and Thank You. I do so APPLAUD you and your decision to share as you have. You are the ONLY other person I've encountered with symptoms like I have. Others here know of my creepy crawling numbness (lasts 15-45") but we thought it only was cause of my spine. I wonder if others too with CAA diagnosis have existing spine diagnoses as well??? There may be a connection in that.
Thank you for you!!! You are such a trouper. Thanks for sharing too!!!
I feel the hugest gift a person can give to another is prayer. So May I Say: God guide and direct your treatment and give comfort with healing to you. All things are possible with God.
Respectfully and Sincerely,
Vivian Bohannon, USA
Hi Vivian. We call that sensation "episodes" over here and they can be terrifying especially when it starts to crawl up the throut. In the hospital I was told not to panic as it is just a sensation and you won't stop breathing. So far they have been correct. Sorry for awfully late reply but suddenly I have started finding so many comments from over a year ago which I have never seen before so not sure if I suddenly clicked a box which lets the comments come through to me.
I was told (i never know what really to believe) that when the feelings start on the left hand side then the bleed is on the right side and vice versa.
Im not a Dr so I can't tell any one that info is correct.
I hope you have had some follow up advice and found a Neurologist who is good for you.
Take care and thanks for writing.
Turmeric has been studied and tested to remove plaque from the brain. Have you tried it?
I will have a look into that suggestion. thanks
I have had two stokes one was six years a go and one end of march one whole side of my body with
Numb the first one I had didn’t last long could not talk right now I am on blood pressure pills and blood thinner still have some issues
Hi Mary,
Were you diagnosed with Cerebral Amyloid Angiopathy?
If so, I must admit I am not up with all the advice about C.A.A but many of us have been told not to take blood thinners due to the fact that when the bleeds occur in the brain, blood thinners will make it more of a danger.
Of course, there are other reasons that blood thinners are recommended.
I am not a Doctor or any kind of medical professional so check with your Neurologist for confirmation of this.
I am sorry to here that you are having to go through this. I hope you are surrounded by caring people to help you through this journey.
Have you tried Hyperbaric Chamber
Could you please spell out the medicine you mentioned around the 24:20 mark? I have not heard of this. Hoping it might help relieve the symptoms of the spells my husband is having.
Not sure which video you are referring to but I have only had one medication which was to calm my brain and stop the "episodes/seizures"
It was called "Epilim" Sodium valproate.
❤❤❤❤ luv ya
Hello there Vonne. So nice of you to comment. Wishing you all the best
My dad is ICU with this
Patrick, so sorry for late reply. I am suddenly finding comments coming through from a year ago and so sorry for lateness.
I do hope your Dad is doing well. I guess it has been a hard 9 months for you all one way or another.
when did you find out you had a diagnosis
I have had symptoms on and off since 2014 and diagnosed in 2020
What is ur age?
I will be 68 in a couple of months