Well done the more people know about Amyloidosis the more they can be helped.

I am two years into my illness with severe proteinuria and no diagnosis. I have a kidney biopsy scheduled for next week and after waiting almost 8 months I finally have an appointment with a Rheumatologist. I have the same symptoms as this gentleman, as well as kidney involvement. I feel like the United States of America is becoming like a third world country when it comes to health care. I have had doctors think I was a hypochondriac, I have had doctors think I was just there for pain medication, I had one doctor tell me I don’t know what’s wrong with you and literally just walked out of the room! Not one doctor took all of my symptoms seriously until severe kidney issues kicked in! Some say that this video is encouraging? This man could have died if he wasn’t self advocating for himself! Healthcare in this country is deplorable unless you are smart enough to do all your own research and demand a diagnosis because all doctors want to do is treat symptoms, not the underlying illness! They don’t want to even take the time to diagnose unless you are actually dying!

@bebuchinapenelope

Жыл бұрын

I hear you...

@thermitegrenade

11 ай бұрын

So very true it's sickening what the healthcare system has become I guess thats why they call it practicing medicine they are practicing on us a lot of them shouldn't even take the oath anymore cause they sure don't go by it.

@dennisbbb

10 ай бұрын

Severe proteinuria is a sign that your kidney is not filtering normally. To find the cause of this, go get a basic urine test for Bence-Jones protein. A positive result will definitely indicate malignant lymphoma or blood cancer such as multiple myeloma or amyloidosis.

@paulawagstaff686

8 ай бұрын

Julie....what's happening? How are you..?

Great spokesman for the Amyloidosis Research Consortium! Great Job Dan!

This is really encouraging I am an athlete myself a road cyclist and a surfer I've been an athlete all my life I've been cycling for 7 years surfing 32 years I was diagnosed with kidney failure last August I'm at Fourth stage now kidney failure just had a biopsy found out I have amyloidosis. I had a heart attack 2016. Due to this amyloidosis. I keept cycling and receiving but the last 6month I have not been able too keep my pace and speed . Now it hurts really bad when I get my heart rate up at 140 bpm . I don't know what the treatment is for amyloidosis. Going too see a hemotogest next week . So if you can tell me what type of treatment you had I would really appreciate it . Thank you.

@zozansinde9610

2 жыл бұрын

Can u tell me what kind of tast I need to do to get diynos

@venomx4093

Жыл бұрын

A very high dose of chemo is generally the first treatment. If organs are involved, they may go with a prolonged low dose of chemo.

Hi Dan. Who is your doctor and what type of treatments are you receiving?

Was your echocardiography test normal at first?

Where has this guy been for the last seven months?

I have these symptoms. All of them expect swelling. I have seen 5 cardiologists and have pain in my organs and back and can’t breathe. 3 years and undiagnosed still. Could be anything. I know how I’m feeling and where I’m feeling it. The shortness of breath I’ve had is completely not normal neither is the pain. I have abnormal cpets but nothing else. Last cpet did show cardiac dysfunction.

@Amyloidosis_ARC

Жыл бұрын

We are sorry to hear about your challenges. We would love to help you on your healthcare journey as much as possible. Please call us at +1 (617) 467-5170 or send us an email at arc@arci.org.

Good morning I was diagnosed with AL amyloidosis for almost a year now, I started chemo but it doesn't seems to be working, every system you have i am living them right, I'm just forty years of age and I live in Jamaica. I could like to know more about your treatment please.

@sweetsushanna-ahh

Жыл бұрын

I’m researching this issue right now.....I saw a comment where someone said to avoid non vegetarian foods I guess to reduce the protein load and to take glutathione tablets. So you can research that as well as NAC since it’s a precursor to glutathione. I’m not a Doctor so please research well. If I come across anything else that is helpful, I will update my comment.

@starflyer3219

Жыл бұрын

Bonemarrow transplant?

@sweetsushanna-ahh

Жыл бұрын

@@starflyer3219 I hope that poster is okay. 🙏🏽

@dennisbbb

10 ай бұрын

If you are diagnosed with AL Amyloidosis you may need Darzalex (daratumumab) injection to clean up the bad plasma cells in your bone marrow. That is the root cause of amyloidosis.

@paulawagstaff686

8 ай бұрын

I started treatment April 2014. Research curcumin (tumeric) it can be a little expensive for sone so take tge tumeric which has about 3-4% curcumin mayvex1/4 top with 1/4 tsp black pepper mixed with a little bit of olive oil. The pepper greatly increases the obsorbtion of the curcumin. You will see when you Google it, tons of info out there. Start with PubMed. All the best

Most of these ads are promoting their clinics, and hospitals. This is so annoying. I also notice none of these vids talk about nutrition. I wonder why?

@starflyer3219

Жыл бұрын

Because you can't cure a genetic disorder with food?

@peaceson14303

6 ай бұрын

I was diagnosed in ATTR In July and I'm on medicine but you absolutely right. None of the doctors talked to me about nutrition and cleansing with arteries. I had to do that research myself. I'm currently on that journey, right now