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calf and hamstring muscles severe pain when standing or trying to walk
watch that your BP doesn't go too low if it does take hydrocortisone see Endocrinology amyloidosis specialist. Do your ankles swell feet etc do your retain fluid ? Do you take Lasix water pill. Whaya… read more
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 am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
Sean I’m sorry you’re not getting what you need from this site. I might have to agree to disagree on some of your points. I wish you the best on this journey we’re all on.
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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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 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
Yes, I think we all have heart failure and neuropathy with all of the other side effects, I have been treating it with the drugs suggested by my Columbia team and also with strength training, fasting… read more
