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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 ( donβt 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?
Eric, I was diagnosed in July 2019 with wild type amyloidosis. This fall will mark my five-year usage of Vyndamax. I am certainly grateful to Pfizer for this excellent drug. I have also been on a⦠read more
My humble opinion:
The more that app is shared the better π
Very helpful
Hoping you are well enough to benefit from the cure that is 3-4 years away.
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.
Recent diagnosis from bilateral CTS. Mayo says ATTR, Cardiologist suspects wild type. Kidney, liver cardiac tests normal. Anyone receiving tafamidis therapy to prevent further progression of disease. In my option, seems tragic that a patient has to progress to some level of cardiac failure before starting treatment if Vindamax or other tafamidis can slow progression.
I have PN as well. Entire left side, and now moving to my face this morning. My son got his meds in 3 days. It will be a week this Tuesday for approval of grant. How do you pay for med?
Registration on line
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 have minor damage to heart but lost unexplained strength in left leg.
Abstract
Background: Transthyretin amyloid (ATTR) cardiomyopathy is a progressive and fatal disease caused by misfolded transthyretin. Despite advances in slowing disease progression, there is no⦠read more
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