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I have been given an expiration year, but my twin pre school great grandchildren owes me money for diapers and formulas. So l'm not going ANY WHERE until I get my money. I just want my money from… read more
Theresa nailed it again! Well said.
Thank you so much for your response.
I think it all depends on the person and how much organ involvement there is. Don’t focus on life expectancy. I know it’s hard but some people have a very short time others can live upwards of 20… read more
Call you cardiologist and get him to help you with the application for meds.
I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
I have 22 years old, turning 23 in september. Like 4 montsh ago i had an cardiology apointment and there they said i have Amyloidois but thats it. I dont know the type or anything about it, i just found it on the paper i got from the doc. It says Amyloidois under observation. I know its kinda impossible for you to tell me something like this, but i just want to know if i got a chance to live up to my 40's at least or just simply die soon in my 30's or even in my 20's.
It took a year to get my diagnosis having blood work and bone marrow test.
I am 53 and recently been diagnosed with AL Amyloid stage 1. I am undergoing treatment and want to know if a stem cell transplant is necessary. The treatment is brutal and I am sick most days. I don't know what my life expectancy is maybe five years.
I would think a stem cell transplant would be the last option when drugs are showing great promise to push the amyloidosis either into remission as I am or extend the life of the patient.
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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.
