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I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
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 take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
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-->>> Question at the bottom.
Hi all. I reached out to everyone I could and managed to get my Dad an immediate (informal) consult with a cardiologist on the board of cardiology at the Swedish chain of hospitals. (He also graduated from Tufts, which I think is a bonus since they have a Center of Excellence there.)
We almost-know my Dad has cardiac involvement (he's had a-fib show up).
We have an informal phone call with the cardiologist in just a few days, and the promise of helping access… read more
Thank you so much Joel!!! That is really, really helpful information. I'm adding it to the list of things to ask and to make sure to know and do.
PYP results – quote from ASNC Practice Points, cited in 2022
“While grade 2-3 or H/CL >1.5 uptake is strongly suggestive of TTR amyloidosis, any degree of 99mTc-PYP uptake can also be seen in… read more
Has anyone had this test to determne what the amyloids are doing? Jeffrey
I had these tests as part of my initial diagnosis. It was both interesting to actually see the twinkling of the fibrils around my heart and appalling just the same. This proved, along with cardiac… read more
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 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.
The wound did not heal and a sample was sent to the Mayo Clinic. My confusion is that although blood tests indicate abnormalities with my kidneys and liver, my doctor is not pursuing any treatment for amyloidosis.
Confirmation of my AL Amyloidosis was made with a bone marrow biopsy. It makes sense to do that as the amyloid protein is made in the bone marrow. The doctor did it in my hospital room. The prep… read more
