Quick Links
About MyAmyloidosisTeam
Powered By
I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
For the team members who have IBS type symptoms. Have you tried an app called Nerva. It is hypnotherapy but they also have FODMAP do's and don't. I am enjoying them.https://try.nervaibs.com/get-star
I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.
You should stay on meds. It helped my brother a lot. He got a heart transplant las November after thanksgiving and he is doing so good now. I hope I get a prescription soon.
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.
I've gotten five different dx from five different specialists. However, none want to put the puzzle together. Most recently, my PC thought I'd had a heart attack-severe shortness of breath, exhaustion, cough, abdominal pain, and chest discomfort. Hospital performed a bunch of tests - stress test was normal and the echo showed mild left wall thickening and mildly enlargement w/grade 1 diastolic dysfunction - the right aortic valve is trileaflet w/sclerosis and mitral valve has calcified annulus… read more
Hi Sandra, to confirm amyloidosis. I had a heart mri that showed suspicion of amyloidosis. I then had a nuclear scan to confirm. I have the wild type. Hope this helps.
Anybody having issues with numbness in the fingers I have non-hereditary cardiac AL
Thank you Nancy! I think I’ve had Cardiac ATTR for a while now even though it’s just being diagnosed. I had carpal tunnel surgery about 12 years ago and trigger on all my fingers and that may have… read more
I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
If you are asking if that device has any significant permanent positive effect on wild-type amyloidosis, the answer is no.
Amyloid fibrils are proteotoxic. Proteotoxicity refers to the adverse… read more
Is Onpattro treatment for wild type Amyloidosis?
Paula, that's the way it works for me. Since I've been back on straight Medicare and CHAMP/VA (Tricare) everything has been working fine with OnPattro.
