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Does AL Amyloidosis Qualify For Disability?
I agree also that the route I had to go in Ga. SSDI will back pay 24 months, I was Diagnose at age 61 Disabled with Limitations still trying work for Insurance benefits was Denied. With Attorney age… read more
I Have Cardiac AMY And Stiff Person Syndrome. What’s Stage 4 Feel Like?
I still BELIEVE and no matter if bad days knock me down for 1/2 days. I get back up. I tell myself, I
hibernated, like a bear, because I needed the rest. TIME NOW TO MOVE FORWARD! Time to see what… read more
What's The "end Game" Look Like?
Great question. I have a lot of the same questions I see here.
I Have Small Amyloid Lumps Under The Skin Of My Scalp That Itch, Tried A Whole Range Of Shampoos Etc To No Avail, Any Ideas?
Has anyone tried a stick on Lidocaine pain patch. They don’t work for osteoarthritis but maybe they will for the itching.
I Am Wondering If I Should Continue To Take Tafamidis As I Am In Stage Iiib Advanced Heart Failure?
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.
Does Medicare Part D Cover Vandymax Treatments?
The articles I read about capping the med costs at $2,000 only applied to 10 medications the first year, 15 medications the second, ETC.. AARP had a good explanation a few months back, but sure hope… read more
Cardiac Hereditary Amyloidosis
Who has cATTR? How long since diagnosis? What are your symptoms? what meds have you taken and/or are taking? If you are on onpattro what has it done for you?
Hereditary amyloidosis, also known as familial amyloidosis, is an inherited disorder that often affects the heart, kidneys, and nerves. This form of amyloidosis is a protein misfolding disorder where… read more
Does Onpattro Help Wild Type Amyloidosis?
Ocular Amyloidosis Treatment
My mom has ocular amyloidosis. She is almost completely blind. Does anyone have suggestions for where to look for more specialized care and treatment? Any advice would be greatly appreciated.
I also have vision problems with Attr-wt. I’m curious about how they diagnosed ocular amyloid.
Does Anyone Else Have Balance Issues?
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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