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I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
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 am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
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.
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.
How can I write the type of amyloidosis in my registration?
Hi, KimDugan
I wrote my type of amyloidosis in my registration. Thank you for answering my question.
k
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
I have 22 years old, turning 23 in september. Like 4 montsh ago i had an cardiology apointment and there they said i have Amyloidois but thats it. I dont know the type or anything about it, i just found it on the paper i got from the doc. It says Amyloidois under observation. I know its kinda impossible for you to tell me something like this, but i just want to know if i got a chance to live up to my 40's at least or just simply die soon in my 30's or even in my 20's.
It took a year to get my diagnosis having blood work and bone marrow test.
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?
