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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
I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
Worse is the double and triple vision. I also get blurry eyes, and runny eyes. I frequently have to squint to see anything. Anyone had similar experiences? Any suggestions for help? Thanks, Bev H.
Thank you Cindy3!!!
Thanks Tee for your reply much appreciated
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
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 have minor damage to heart but lost unexplained strength in left leg.
Abstract
Background: Transthyretin amyloid (ATTR) cardiomyopathy is a progressive and fatal disease caused by misfolded transthyretin. Despite advances in slowing disease progression, there is no… read more
