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calf and hamstring muscles severe pain when standing or trying to walk
thanks for your comments Judi how are you doin? What kind of amyloidosis do you have do you take Vydamax? Do you have any skin issues from amyloidosis.Is the medicine called Requip?RX did you get it… read more
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
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I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
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.
My husband has to do most of the cooking. I do assist him if he asks. We have cut way down on salt. We use Mrs. Dash seasonings and use garlic powder, onion powder and different spices. The… read more
Some think that massive under reporting of Amyloidosis reporting leads to Primary Amyloidosis not being the most common.
Could be. I don't know how they decide what is a rare disease is.
Call you cardiologist and get him to help you with the application for meds.
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
