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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
My mother was diagnosed with AL Amyloidosis on January 6, 2023 and passed away from it 6 months later, June 24, 2023. I really want to be tested but don't know where to go. PLEASE HELP!
Thanks so much Theresa!
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 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.
It depends what type of Amyloidosis she has, there is one that is hereditary. If she has the hereditary type you can be tested to see if you have it.
Thank you will do I’m in an electric wheelchair just started the process hope u doing well
I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
There’s other blood markers that indicate but don’t prove the existence of amyloid deposits (aka fibrils). There’s a nuclear imaging process that provides active imaging where you can see the fibrils… read more
I definitely need to control my salt intake . I love to cook but fry a lot . I use olive oil but it’s still fried . I’ve been having bad acid reflux for months now . I’m really going to watch what I eat from now on . That was a good read . First thing I’ve read about diet on this disease . I’ll be down at Stanford for more tests Monday and I’ll ask more about a healthy diet . But our main concern is to determine what kind of Amyloidosis I have and where . I could use any advice about how to live… read more
Heart biopsy procedure sucks but only last a few minutes. I can’t believe they do it while patient is awake, so yes it sucks. The bone marrow biopsy is piece of cake. My brother did faint however soon… read more
I had cataract surgery and now can't see from my right eye,(only right eye done so far. Four surgeries later and no help.
No problems here - except usual old age reading difficulty needing a pair of inexpensive glasses off the shelf.
Regards all.
Richard
