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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 think the only way to really understand how much Tafamidis works is by comparing the heath thickness before and after, at least 1 year of therapy. Has anyone got this information?
Sheldon, is the Acoramidis also manufactured by the same company as Tafamidis and Patisiran?
I was diagnosed last year by both the Mayo Clinic and Boston University with the Wild Type. Cardiac biopsy showed no involvement. I do have carpal tunnel, and severe neuropathy.
I have wtattr also -tests show no heart involvement yet-had cps on both wrists-I take gabapentin and it works well for neuropathy.Ifound out about the amy. at that time.January 2023 3 months later had… read more
I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
Signs of amyloidosis can be seen in echocardiograms nut not by the majority of cardiologists whose skill set doesn't include comprehensive or accurate reading of echocardiograms. Mine was totally… read more
I’m seeking answers from those who have cardiac amyloidosis long term. What symptoms are progressing on you rapidly.
Thank you Mary Ann! So many issues I’m having are similar, swallowing issues, memory, etc. my cardiologist told me I have probably had this cardiac Amyloidosis long before I was Dx. Despite taking… read more
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.
I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
Hi. I had a numbness feeling in my left arm and hand for a few weeks about 6 months ago. It disappeared so I didn’t think too much about it. It’s back again now for a few weeks and I sometime get slights pins and needles in the tips of my fingers. Could this be a symptom of neuropathy? Could it be there for a few weeks, disappear and then come back again? I have hATTR cardiac Amyloidosis and am in Vyndaquel for 8 months now. Thank you.
