1. < Blood Cancers & Disorders

Recently diagnosed with AL Amyloidosis: Any advice?

Posted by vmarra @vmarra, Jul 14, 2022

My mom was recently diagnosed w AL Amyloidosis, our local hospital missed some important tests . We just had our first trip to Mayo. I feel now that my mom is discouraged and more scared than before and is declining quickly. Our local hospital did not show concern for the heart however when I look at her labs from Mayo that were done yesterday it indicates differently. I never knew what this disease was until my mom got it and I’ve been fighting hard for her since. I begged our local hospital to check heart bio markers and they just brushed me off . I’m sad , frustrated, and I just hope I’m wrong in her results that have returned thus far. She has bad neuropathy and some kidney involvement. My mom is only 60 with 4 grandkids under 10 and one on the way. Advice or suggestions on navigating all this is welcomed

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

vmarra | @vmarra | Aug 13, 2022
In reply to @oldkarl "@vmarra Well, your family is starting off right. The first thing most Amy.. patients must learn..." + (show)
@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

Jump to this post

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

REPLY
peggyjean | @peggyjean | Aug 13, 2022
In reply to @oldkarl "@vmarra Well, your family is starting off right. The first thing most Amy.. patients must learn..." + (show)
@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

Jump to this post

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

REPLY
1 reply
oldkarl | @oldkarl | Aug 13, 2022
In reply to @peggyjean "Where can I find reduced cost insulin for my husband….🙏❤️🥰" + (show)
@peggyjean

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

Jump to this post

@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

REPLY
1 reply
peggyjean | @peggyjean | Aug 13, 2022
In reply to @oldkarl "@vmarra I get mine, Novolin R or N, from Humana Pharmacy (Centerwell--or is that Centerfold-- Pharmacy)...." + (show)
@oldkarl

@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

Jump to this post

Thanks!🤗

REPLY
jan44 | @jan44 | Nov 8, 2022

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. 🙏💝

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 19, 2022
In reply to @jan44 "Hello my name is Jan and I am 60 yrs old diagnosed Aug 16 ‘22 with..." + (show)
@jan44

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. 🙏💝

Jump to this post

Hi @jan44, I'm sure @vmarra would appreciate connecting with you.

I see AL amyloidosis is a new diagnosis for you. How was it discovered? How are you doing on treatment?

REPLY
jan44 | @jan44 | Nov 19, 2022

Hello Colleen,
It was discovered because of the high level of protein found in my urine. My doctor had been testing me for ACR levels due to a UTI with high leukocytes. I am blessed to have had this info to go on. It was still a waiting game to get in and be seen by the kidney Sp though and then everything was urgent after the kidney biopsy results. I am in treatment now with one full month under my belt. Today I’m feeling very tired and I have some foot neuropathy from Amy and now the treatment can make that worse. I’ve had blood work done just today and so far so good. My ACR isn’t as good today though it seems to fluctuate. My immunoglobulin test has shown that I am low in immunity. I will stay away from ppl now until I find out I’m in better shape. If everything goes as planned I will have a stem cell replacement treatment in March which I’m nervous about but I understand it’s the best line of treatment for Amy.

REPLY
anng53 | @anng53 | Nov 20, 2022

My prayers will be with. I know it’s hard to wait to be seen, to wait for news, to wait for treatment. You are lucky to have this found early, before too much damage was done. There are lots of people here who have had stem cell transplants. Take heart! You are healthy enough to have a transplant. That is good news.

REPLY
jebcyn | @jebcyn | Dec 8, 2022

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.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Dec 8, 2022
In reply to @jebcyn "Hi vmarra. I’m new to this site. How’s things going for your Mom? I’m a 10..." + (show)
@jebcyn

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.

Jump to this post

Hi @jebcyn Welcome to Mayo Connect. It’s inspirational that you’re a 10 year survivor! Would you mind sharing your AL Amyloidosis journey with us?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.