I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
I have read that people with AL amyloidosis who have neutropenia may need to avoid foods that are more likely to cause infection. Soft cheese, blue cheese, mayonnaise, raw eggs, and yogurt are foods that can contain higher levels of bacteria. So, should drinks like kombucha be avoided as well ? Could that be a cause of rectal bleeding w/ bowel movements ?
Ask your specialist. Don’t follow online advice from lay people.
Hi Rob, Thx for your response. I have Congestive Heart failure (Diastolic muscles) complicated by Amyloidosis which results in Edema. I wear compression stockings daily and take Bumetanide ( water… read more
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.
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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.
You should see a gastroenterologist. Maybe an endoscopy & colonoscopy and have them specifically biopsy for amyloidosis. If they don’t test for that specifically they’ll miss it. Visually everything… read more
I have an enlarged liver (19cm) and protein in my urine but not showing up in my blood My basic blood work is otherwise normal. I am waiting for my provider to confirm the diagnosis.One year ago I lost 1olbs weight and I have neuropathy in my toes but no other obvious symptoms. Does this sound like early stage amyloidosis?
Additional thought to earlier post: With hindsight I can specify when to the week I became infected with AL almyloidisis. In late Sept 2020 my VO2Max started a long dive . VO2Max is available from… 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