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Пікірлер
@dvrprotechs 17 күн бұрын
Great presentation and updates that help explain an otherwise complicated and little-known disease to family, friends, caregivers, and yes - frontline healthcare workers. Thank you ASG!
@conniefitzpatrick8273 28 күн бұрын
Thank you for sharing the information.
@mayablitshteyn6837 Ай бұрын
Dr. Mori I’d like to participate in sharing the screen please thank you
@user-qc3yw8lr9z Ай бұрын
For people who are ill or absorbing new information, and I'm elderly, you are speaking SO quickly that I have had to replay this video 3 times. Thank you for the info, but please speak more calmly and slowly. I have Cardiac Amyloidosis and my recent bone marrow biopsy showed NO Amyloid and therefore no Myeloma, so the process is now to re-identify my Amyloid type ( probably wild ) and proceed with treatment.
@terrik7254 Ай бұрын
Live in WA state any providers that can order these scans
@jandotti Ай бұрын
Alguém a procura ???
@EL-yi6df 2 ай бұрын
Low blood pressure. I'd appreciate if the range can be mentioned.
@patrickcoyle682 2 ай бұрын
Im 34 soon to be 35 in December. I started with symptoms last summer. Been diagnosed with hattr. Wating on cardiology/screening. It clearly is active and i feel quite bad..due to how often im getting most symptoms now. Blowing out my ass walking not far.. waking most days with numb/tinly/burning pain in arms/legs from feet to knees and elbos to hands..stomach been on one last few months..random electric pulsating can happen at random anywhere in my body. Regards of whats to come and my time left. All praise and glory god almighty. Godblss you all.
@EstherHay 2 ай бұрын
Is this information true for Alect2 Amyloidosis?
@AmyloidosisSupportGroups 2 ай бұрын
No. AL Amyloidosis is a different type of amyloidosis from ALECT2 Amyloidosis and treatment is very different. For a recent discussion of ALECT2 Amyloidosis see this talk by Dr. Nelson Leung, nephrologist at Mayo Clinic m.kzbin.info/www/bejne/mWm4ZGWEbrunf8U
@RROCEPWSociety 3 ай бұрын
Unfortunately, the information regarding the 2025 Medicare Part D OOP limits is not completely correct. The OOP limit of $2,000 annual maximum applies only to COVERED drugs. For 2025, I cannot find any insurance company that covers Vyndamax any more. They've dropped it. I am being told it will cost $322,000 per year for Vyndamax.
@travellerva 3 ай бұрын
However, many insurers still carry Vyndaqel on their formulary. Insured cost for this is ~$1,100 per year. Duh! All you need is to take 4 per day rather than 1. How on earth are these prices derived?
@AmyloidosisSupportGroups 3 ай бұрын
Pfizer provides tafamidis in two formulations: Vyndamax, a tablet with 61mg tafamidis, and Vyndaqel, a capsule with 20mg tafamidis meglumine. Four Vyndaqel capsules taken once per day is the equivalent of one Vyndamax tablet taken once per day. Some Medicare Part D drug plans for 2025 cover Vyndaqel but not Vyndamax. Some Medicare Advantage plans for 2025 cover both Vyndaqel and Vyndamax while others cover only one or neither. Prior to selecting a plan, talk to your doctor about switching between Vyndamax and Vyndaqel. To see a sample (not a complete listing) of Medicare Part D plans and Medicare Advantage plans for 2025 and whether they cover Vyndaqel or Vyndamax, refer to this Google Sheet from ASG: docs.google.com/spreadsheets/d/1W6mGPJZdT6TH5wLvg3SMHsn-IHNtpFedV46V1q9-sVQ/edit?usp=sharing
@DR07921 3 ай бұрын
My mum was misdiagnosed with RA and put on Sulfasalazine, which didn't help at all. I always thought it was odd that she only had severe pain, burning and numbness in her hands and feet. Sometimes, even the slightest touch would have her screaming. She then got dementia and severe bruising around her eyes. Sadly she passed 2 years ago and Amyloidosis was discovered PM. I have just been diagnosed with RA and I have carpel tunnel syndrome in both hands. I know I need to go and get tested but I'm scared to do so.
@SatishChandra-kv7tj 4 ай бұрын
A request for an updated presentation may be considered. Amyloidosis Support Group of India( ASGI).
@Knowledgewith412 4 ай бұрын
We can't find any treatment for it in Pakistan
@Knowledgewith412 4 ай бұрын
She lose weight swallow feet's and body her heart is working only 25% and below
@Knowledgewith412 4 ай бұрын
My mother have Paracardial Amyloidosis can you please tell me about treatment
@RobertOConnell-l8d 5 ай бұрын
In 2020 my Troponin went from 0.011 ng/m to .012ng/m in 6 hours. It was seen has high but according to the slides it may have been normal? What did I miss
@rsmalesk 5 ай бұрын
This was great. I learned so much.
@DoinMaBestt 5 ай бұрын
i loooooove the animation, ane really well explained thank you alot
@AyurvedicDoctor-y6q 5 ай бұрын
thank you for this knowledge...use of herbal formulations like Aloe Vitals and Navkarshik Churna by Planet Ayurveda is very effective in the patients having Amyloidosis.
@joelalmon3088 6 ай бұрын
Currently TRYING to gert an Amyloidosis Diagnosis. Cardiologist yesterday ... what an absolute WASTE OF TWO HOURS OF MY LIFE, next stop nephrologist and hemotologist
@vishalchaudhary-nf6gr 6 ай бұрын
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.
@saurabhgupta5825 7 ай бұрын
Excellent presentation,especially the analogies were superb.Thank you very much.
@rogerharper9304 8 ай бұрын
"Promosm"
@maletero9888 8 ай бұрын
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?
@lloydwelch6492 9 ай бұрын
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.
@joeycee2585 7 ай бұрын
Best wishes. 🙏
@dvrprotechs 5 ай бұрын
Sorry for your loss.
@satishchandra9331 9 ай бұрын
Useful
@captn_maverick 11 ай бұрын
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.
@Nygguy820 11 ай бұрын
i gained 20 lbs in 2 weeks from fluids because my kidneys are failing
@munirabdullatif2022 11 ай бұрын
It is a very helpful and amazing presentation about the treatment targeting for amyloidosis. Thank you so much
@Nisha-kl8rl 11 ай бұрын
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.
@munirabdullatif2022 Жыл бұрын
Nice webinar.. thank you all
@marietompkins5553 Жыл бұрын
Excellent presentation. I was diagnosed in 2007, treated in 2008 at the Mayo Clinic, and doing well.
@SidneySmith678 Жыл бұрын
Very thorough. Thank you!
@patriciaheinze4905 Жыл бұрын
I ask for more videos and study results, thank you
@patriciaheinze4905 Жыл бұрын
I would like to know more about this study as it concerns me. I am 47 and female.
@eryilkce Жыл бұрын
Thank You! I believe ,that most of it is also valid for AL Amyloidosis paients?
@beatricesiaw8776 Жыл бұрын
Can prevent organ damage.
@beatricesiaw8776 Жыл бұрын
Humanity side is very important.
@beatricesiaw8776 Жыл бұрын
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.
@guitaristinseattle Жыл бұрын
I've got it, off to Seattle in a few weeks to UW.
@Itsme-jv4cd Жыл бұрын
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?
@beatricesiaw8776 Жыл бұрын
Does Monica serve clients in NC?
@ballsack4321 Жыл бұрын
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
@marcelliott125 Жыл бұрын
'PromoSM' 😒
@Itsme-jv4cd Жыл бұрын
People with amyloidosis can have tendon ruptures other than just biceps,such as Achilles tendon rupture.
@TruePatriot59 Жыл бұрын
Awesome presentation 👏 Thank You Dr Morie!!
@Itsme-jv4cd Жыл бұрын
Why would a ruptured biceps tendon be seen with ATTR ? What about other tendon ruptures ?
@grooviechickie Жыл бұрын
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.
@danielle810 10 ай бұрын
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.
@EL-yi6df 2 ай бұрын
@@danielle810 How does you dad feel?
@florabraswell-nm1re Жыл бұрын
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
@florabraswell-nm1re Ай бұрын
l had an MRI done today , will that show nerve damage? thanking you in advance, not one doctor has checked me 😢😢😢😢😢😅😮😮😮.
@tonyfagbemi5276 Жыл бұрын
How do I join the Amyloid group?
@AmyloidosisSupportGroups Жыл бұрын
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.
@wilsonsilva6226 Жыл бұрын
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..
@KMx108 Жыл бұрын
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.