← Return to Recently diagnosed with AL Amyloidosis: Any advice?

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@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

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Replies to "@vmarra Well, your family is starting off right. The first thing most Amy.. patients must learn..."

Thank you 🙏🏼. I’ve watched and listen to tons. But any Amy flicks you recommend let me know

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