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How Does Having A Stem Cell Transplant Affect Ones Life Expectancy With AL Amyloidosis?
I think it all depends on the person and how much organ involvement there is. Don’t focus on life expectancy. I know it’s hard but some people have a very short time others can live upwards of 20… read more
What Causes Or Balance Problems?
Is it related to peripheral neuropathy? Muscle weakness?
Thanks in advance
Joel
Joel it could also be related to whatever treatment you’re receiving. Also possible deconditioning. You should speak with your doctor about it. There may be meds you could take or exercises you could… read more
Any Home Remedies For Nausea?
Among other delayed side effects of the chemo I am fighting daily bouts of nausea and sometimes vomiting. I now have Dysautonomia and I’m more sick now than when I was on chemo for a year! Does anyone have recommendations for treating the nausea without using prescription drugs? I have 4 prescriptions but the side effects of some of them are terrifying! And some simply don’t work and some just put me to sleep all day. Just wondering if one of you has a magic potion you would kindly share? 🤢
Hi Galparrot
Why nighttime MMJ gummies? Do they make you sleepy and then does the anti-nausea effect last during the next day? And do you know how much THC and CBD?? 1:1 ratio?? So many questions… read more
Has Anyone Experienced Confusion Related To CyBorD Chemo Treatments For AL Amyloidosis? If So, Any Recommendations To Help Combat It?
My husband is in his first round of chemo. We met with the oncologist at Emory Amyloidosis Center and he made recommendations to help with the confusion my husband is suffering with, which wasn’t there prior to the treatments.
What's One Natural Remedy That's Helped In Managing Your Amyloidosis?
Is there a doctor anywhere on the planet that knows anything abut "A' ? I have 5 and they don't knw thrir Head from their A-- about anything to recommend for Diet, Exercize ,etc.
Labs And Where Amylodosis Has Started To Affect Your Body.
Would love to hear from anyone willing to share their labs when first diagnosed.
Does everyone have monoclonal protein in both blood and urine?
I have given you my email, send me a message, and will add you to the group. These are some amazing people, and always there to help each other.
I Understand That Nattokinase Destroys Amyloidosis. Is Anyone Taking It? What Kind Of Results How Can I Find Out More About.
I have been watching and searching castor oil. It works for many things. At least for me Bertha Florence
New Here And Had My First Appointment With Hematologist/Oncologist Yesterday. Questions!
My labs showed IgA levels 953
M protein .88
IgA Kappa in the beta region with monoclonal spike
Blood in urine
Very tired
Lost 28 lbs in 6 months
Neuropathy in both feet
Back pain
Low grade fevers
Chest pain
Shortness of breath
High heart rate
Raised rashes on face and arms
Itchy feet/back
Anus pain
Swollen tongue with ridges
I had an autoimmune kidney disease as a kid. Went in remission 25 yrs ago.
I want to think this is not Amyloidosis, but doc said he suspects this. Getting Bone… read more
Are you familiar with nattokinase as a potential treatment?
Anyone Else With AL Amyloidosis In Their Digestive System?.
I am experiencing daily bouts of nausea, vomiting, diarrhea and extreme drops in blood pressure. For the past 2 months now. I am currently in CHR and have been done with chemo for one month. Didn’t have any of these issues while on treatments. Any thoughts or similar issues out there? I’m just wondering if it’s the Amyloidosis or a result of nerve damage from the chemo? I’ve had bacterial and parasite tests done but no evidence of either. Also had a recent echocardiogram which was normal. No-one… read more
How about a cardiac MRI?
Please. How To Recognize Disease?
Hello. I am from Vietnam. In VietNam we can not receive any information about Amyloidosis. It is really new here
- This disease was first reported in my grandmother. Then my grandmother gave birth to 8 children. 7 out of 8 people get sick. 3 of them died, including my father
- Recorded symptoms include: enlarged heart, leg edema, persistent diarrhea. Doctors could not say exactly where the disease came from. Because almost every things has problems. But the heart is the biggest problem.… read more
To recognize amyloidosis, a range of tests and examinations are typically conducted:
1. Physical Exam
- Health History: Asking about personal and family health history.
- Joint Check: Checking… read more
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