Quick Links
About MyAmyloidosisTeam
Powered By
Age 89, Congestive heart failure, Osteoarthritis, and Glaucoma.
On Vyndamax 6 years
That’s ridiculous!
https://www.drugs.com/search.php?searchterm=Vyn...
I found the above. As far as supplements you could google ex: tumeric interactions with vyndamax. Do each supplement separately.
… read more
Hi Rob, Thx for your response. I have Congestive Heart failure (Diastolic muscles) complicated by Amyloidosis which results in Edema. I wear compression stockings daily and take Bumetanide ( water… read more
I had a stent put in my left eye 3 years ago and now have about 10% vision. Right eye has about 80% vision. My understanding is the Glaucoma attacks the optic nerve and there is no cure available. I… read more
Same here my friend. 3 years too.
So far I’ve had no issues with Vyndamax it’s some of the other medications I’ve taken that had given me bad side affects.
My husband was diagnosed with AL Amyloidosis in November 2023. I started seeing changes in him going back to about 2017-18
He’s always had yearly physicals that were normal, so I just thought maybe he’s getting older. Looking back I’m wondering if it’s was the beginning of what is now an advanced stage of AL Amyloidosis. Any thoughts are greatly appreciated!
I believe we carry the disease lo g before it is diagnosed. The way mist diseases go, they lie recessive for years and by the time they show up they begin to start giving us trouble. I was having… read more
My mother was diagnosed with AL Amyloidosis on January 6, 2023 and passed away from it 6 months later, June 24, 2023. I really want to be tested but don't know where to go. PLEASE HELP!
Thanks so much Theresa!
My husband's PYP scan came back negative. Of course I'm thrilled but I can't believe we are not dealing with Amyloidosis. His symptoms mirror nearly all of the symptoms of this disease. In my research I've heard that a fat pad biopsy can provide a definitive diagnosis. Is that true?
Thank you for the advice. He has the fat pad biopsy scheduled for next week despite the specialist cardiologist poo-pooing the accuracy of the biopsy. In all of my research, I continue to see the fat… read more
My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?
I had a stroke in Cerebellum that I thought was cause of balance issues ( don’t know when), but I think it may be related. Had gotten worse lately. I have CM ATTR so it may have triggered the stroke.
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
You’re not able to get chemo in Vietnam?
