Recently diagnosed with AL Amyloidosis: Any advice?

@vmarra Well, your family is starting off right. The first thing most Amy.. patients must learn is that very few local medical personnel and facilities have a clue about any form of Amy. The end up running the wrong tests (proBNP instead of NTproBNP, proBNP is almost useless.), etc. My clinic even took my 24-hour urine collection and measured only half of it. And my primary refuses to order the DNA because he "cannot cure all the diseases which might show up". Second, there are many bargain suppliers for your meds if you need them. Mail order, etc., if done right, is just as good as from the manufacturer. I now pay $40 per month for my insulin. Last, ANY form of AMY only rarely comes on by itself, and most forms of myeloma work with and support diseases and disorders which are not directly related to the AMY. I have both Gelsolin and Limb Girdle Muscular Dystrophy r23, which are almost identical but with some distinguishing markers. Anyway, welcome to the club, and take it easy. You will learn volumes about yourself, especially if you start watching the Mayo flicks about AMY. oldkarl

@vmarra Well, your family is starting off right. The first thing most Amy.. patients must learn is that very few local medical personnel and facilities have a clue about any form of Amy. The end up running the wrong tests (proBNP instead of NTproBNP, proBNP is almost useless.), etc. My clinic even took my 24-hour urine collection and measured only half of it. And my primary refuses to order the DNA because he "cannot cure all the diseases which might show up". Second, there are many bargain suppliers for your meds if you need them. Mail order, etc., if done right, is just as good as from the manufacturer. I now pay $40 per month for my insulin. Last, ANY form of AMY only rarely comes on by itself, and most forms of myeloma work with and support diseases and disorders which are not directly related to the AMY. I have both Gelsolin and Limb Girdle Muscular Dystrophy r23, which are almost identical but with some distinguishing markers. Anyway, welcome to the club, and take it easy. You will learn volumes about yourself, especially if you start watching the Mayo flicks about AMY. oldkarl

Where can I find reduced cost insulin for my husband….🙏❤️🥰

@vmarra I get mine, Novolin R or N, from Humana Pharmacy (Centerwell--or is that Centerfold-- Pharmacy). I order on line, 90 days at a time. That means I get 6 vials each order. I am very careful about what and when I eat. I think as more of us push for lower prices, we will get them. oldkarl

Hello my name is Jan and I am 60 yrs old diagnosed Aug 16 ‘22 with AL Amy with the same but mild neuropathy and kidney high proteinuria along with other. Started Treatment Oct 25 almost finished 1st month. Several tests amyloids everywhere . Heart is good so far . If you’d like to keep in touch or your mother then I would glad to do this. 🙏💝

Hi vmarra. I’m new to this site.
How’s things going for your Mom? I’m a 10 year survivor and I have a genuine concern. Please let me know.