After several years of decline and misdiagnosis my brother-in-law was diagnosed with amyloidosis. He was sent to "the best in Connecticut" amyloidosis doctor at Yale in New Haven. Turns out the doctor was the only amyloidosis doctor in Ct... so technically, also the worst. He needed a life vest, which Medicare refused to provide. Instead, he was given a useless pacemaker. He declined rapidly, even being on chemotherapy and other treatments for this disorder. He died while my sister was downstairs and had no idea he had ended up on the floor. His son tried CPR, but he was never revived. If you ask me, some idiot at Medicare should be charged with murder. Oh sure, they saved the system a few bucks, but at the cost of his life.
Like to hear the rest of the story yes I understand how this can happen. my doctor sent me to a cardiologist that had experience in the heart. She was from Africa and had seen this before sent. it’s a long story so I’ll stop there 2016. Discovered it was Amylordsis.
So sorry for your loss. I, too, am struggling with what I thought was amyloidosis. After getting approval from the VA for biopsies, they came back negative. My gut tells me I have this disease because all the symptoms are there, and especially because after 14 months, I still have no diagnosis from my healthcare "experts." On all accounts, this is a hard disease to detect and one that many doctors have no experience with. May the memory of your brother-in-law be eternal.
@edwinjacobs1 Texas Enlarged Left Ventricle Hypotension (low blood pressure) Chronic Kidney Disease Peripheral Neuropathy Carpal Tunnel Chronic Fatigue/Weakness Chest Pains Sore Throat/hoarsness (like Dan) High Lamba Light Chains Unexplained Weight Loss Elevated Triponen All occurred around same time last year.
After several years of decline and misdiagnosis my brother-in-law was diagnosed with amyloidosis. He was sent to "the best in Connecticut" amyloidosis doctor at Yale in New Haven. Turns out the doctor was the only amyloidosis doctor in Ct... so technically, also the worst. He needed a life vest, which Medicare refused to provide. Instead, he was given a useless pacemaker. He declined rapidly, even being on chemotherapy and other treatments for this disorder. He died while my sister was downstairs and had no idea he had ended up on the floor. His son tried CPR, but he was never revived. If you ask me, some idiot at Medicare should be charged with murder. Oh sure, they saved the system a few bucks, but at the cost of his life.
Like to hear the rest of the story yes I understand how this can happen. my doctor sent me to a cardiologist that had experience in the heart. She was from Africa and had seen this before sent. it’s a long story so I’ll stop there 2016. Discovered it was Amylordsis.
So sorry for your loss. I, too, am struggling with what I thought was amyloidosis. After getting approval from the VA for biopsies, they came back negative. My gut tells me I have this disease because all the symptoms are there, and especially because after 14 months, I still have no diagnosis from my healthcare "experts." On all accounts, this is a hard disease to detect and one that many doctors have no experience with. May the memory of your brother-in-law be eternal.
@@dvrprotechs where do you live? What are your symptoms?
@edwinjacobs1 Texas
Enlarged Left Ventricle
Hypotension (low blood pressure)
Chronic Kidney Disease
Peripheral Neuropathy
Carpal Tunnel
Chronic Fatigue/Weakness
Chest Pains
Sore Throat/hoarsness (like Dan)
High Lamba Light Chains
Unexplained Weight Loss
Elevated Triponen
All occurred around same time last year.
Wow, so sad and so unnecessary. I’m sorry