Welcome to the Amyloidosis Support Groups RU-vid channel. Here you will find informative videos from ASG webinars, meetings, and other resources to help you understand and manage this debilitating disease. Our videos include presentations from the leading amyloidosis physicians and researchers in the US, so please take advantage of their expertise!
Amyloidosis is a rare, chronic and deadly disease where a mis-folding protein creates amyloid deposits within the body. It has a variety of causes and patterns of progression usually symptomized by progressive cardiomyopathy and neuropathy. Amyloidosis Support Groups (ASG) is a 501 (c)3 non profit corporation dedicated to providing support for patients, caregivers, and families of those suffering from amyloidosis. Please see our website for more resources and the ASG support group meeting and webinar schedule.
Thanks to channel, for shedding light on amyloidosis. 🌟 I was diagnosed with amyloidosis, and Planet Ayurveda's herbal supplements have been a lifeline. My symptoms have significantly improved. If you're dealing with this condition, I highly recommend their products. My friend's father also benefited from their supplements.
If someone KNOWS and they they have a Kappa lightchain MGUS through testing then finds blockage in their LAD, is that concern AL amyloidosis may be playing a part in the heart event or is there anything to be pointed out to the 2 different and separate teams? Does this make the MGUS more than a monitoring event, should my oncologist be more concerned?
Diagnosed a few weeks ago. I had my bone marrow biopsy 3 days ago. Will find out which kind I have on wed 2 days from now. My dad had all the same symptoms I have. He died 5 years ago.
Thank you very much Doctor. Very happy to find this lecture/ short insight. I am medical student and contemplating making some research in this topic therefor looked this lecture to get the wind.
Ayurvedic therapies aim to restore balance in the body's energy systems. Explore the potential benefits of incorporating Planet Ayurveda medicine into your holistic Amyloidosis management plan.
Thank you Boston Medical Center for your education and thank you Makenzie for creating the foundation. Its very important to educate the medical community and the population at large. People are being misdiagnosis with Alzheimer’s disease even though they may not have it and have amyloidosis. Duke medical center needs improvement on diagnosing people quickly because it's a time sensitive disease.
What is the mechanism that tells the bone marrow to make more light chains ? Is it an infection, virus or something else that initially starts this process ? Or is it just a healthy person and out of the blue the bone marrow just starts to make excess light chains that will misfold for no reason?
Wish me luck, tomorrow morning im taking my very poorly Dad to his doctors to discuss a few of the items ive learned from this fantastic video (thank you) and also to ask about antioxidants such as curcumin/green tea/olive oil and lemon. Without sounding disrespectful i do honestly believe my Dads case has not been given the full support he should have received. Ill know more tomorrow but as it stands I honestly feel that this video has contained more help and information than he's received by a long way. Thank you for putting this onto here xx
I'm curious about this too. My partner (76, ATTRwt) ruptured his bicep tendon a few years ago. Such a random and bizarre thing to happen! We've only recently been told about his CA and are wondering about the connection. There are issues with the tendons in the wrists (carpal tunnel) and I have read about the tendons and muscles in the lumbar spine too.
My dad has amyloidosis attr (hATTR, we found out recently. I am being tested right now) and his bicep ruptured just 2 weeks ago... I was wondering if this was because of his illness or not.
Lori l finally found my problem, after researching and researching all the other problems, this is what l have ! I am 99 .9 percent convinced that this is it , this always sounded like MS to me but it was a Peripheral Autonomic Amyloidosis! I need to have the HATTR or AApoA1 gene checked l am asking the lab people to check me for this or whatever l see Dr Micolucci to have this discussion
Hi Tony! We have separate Facebook groups set up for several different types of amyloidosis. Have you been diagnosed with the disease and if so, which type do you have? I can direct you to the correct group once I have that info.
I have in one day, 2000 isolated supraventricular extrasystole, without work and make any kind of forces. My chest hurts when that happens and I feel tightness in my chest and dizzy. This is something to worry about it??!! I’m always super tired.. all my muscles hurts when I wake up. My feet’s hurts all the time, like I’m stabbed.. I use Tafamidis almost 4 years, I’m losing weight. My memory has changed, my strength are flying away. My 3 year old son needs me.. and i don’t want make it suffer because I’m sick..
I had supraventricular tachycardia, dizziness, weakness, was losing weight, had stabbing pains in my feet, among many other symptoms and they all either subsided or went away completely with ultra-high dose methylcobalamin injections. I have an ATTR mutation but am not currently on any other treatment. My condition could be better, but it is definitely a lot better than it was. I'm not sure why this worked for me, or if it will work for others, but I wanted to mention it to you incase it helps. I also take high doses of oral methylfolate with the methylcobalamin injections. I get both without a prescription but my doctors are aware this is helping me. No one understands why I benefit from such high doses. I wish I knew.
I have been seeing an Oncologist about My kappa is high @ 22.83 which is high/ Lambda level is 11.07 Kappa/Lambda ratio is 2.06 which is high but he isn't concerned does Dr Gertz ever post on any website so i could converse with him I just keep getting bounced around to different Drs and I'm at my wits end.
I have been seeing an Oncologist about My kappa is high @ 22.83 which is high/ Lambda level is 11.07 Kappa/Lambda ratio is 2.06 which is high but he isn't concerned does Dr Gertz ever post on any website so i could converse with him I just keep getting bounced around to different Drs and I'm at my wits end.
He compares Amyloidosis with assembling furniture with tool that doesn’t fit. I would compare it with non-degradable material like plastic in a composter.
How can I stay in touch to see how well these new medications are coming along. My wife is the TTR type on Tafadimis and its very costly and we don't know if it is doing it's job. My wife's EFF is about 15-20% and she gets tired alot. Right now, if any of these new meds get approved they would be too costly to use for the senior on Medicare.
Is there a safer remedy for cardiomyopathy than Tafamadis and Onpattro? Tafamadis costs me $1000/mo and Onpattro ran my wife’s kidney numbers up as well as being extremely expensive.
My mum had this frightening diagnosis Amyloidosis in 1988 just in her skin/ hands for which she has had decades of easily permanently bruised fingers/ hands. She has lived till now 2022 but had health declines over the years. But I'm grateful she survived the original scary diagnosis. But is very poorly nowadays and I do wonder if Amyloidosis has had anything to do with her chronic health declines especially thyroid and severe osteoporosis and AF in the past decade.
I was diagnosed with AL in October 2022, I had symptoms since September 2021, I thought I had carpel tunnel, had afib & stroke,2/3/22. 2 failed cardioversions, one aborted ablation because MD couldn't pass pediatric tee probe,because of my large scalloped tongue, I've lost 34 lbs, since February 2022. Live on liquid diet, I have great Physicians, Dr Goldstein and Dr Kates in Saint Louis Missouri, Barnes &Jewish Hospital. I start Cyborg D treatment on 1/17/23. Also I may be participating in a clinical trial if they accept me. This is very hard,since I was healthy all of my 64 years, and worked 30 years as a Registered Nurse. It's hard to go from a care provider to needing care myself.. Watching these videos have been helpful and I'm am greatful for them. Thank You.
