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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

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soonerfan | @soonerfan | May 17 10:00am
In reply to @colleenyoung "Welcome @mimi4968, I moved your question about new treatments for AL amyloidosis to this existing discussion:..." + (show)
@colleenyoung

Welcome @mimi4968, I moved your question about new treatments for AL amyloidosis to this existing discussion:
~ Recently diagnosed with AL Amyloidosis: Any advice?
https://connect.mayoclinic.org/discussion/al-amyloidosis-2/

I did this so you can read previous posts and connect with other members like @victorino @vmarra @jan44 @jebcyn and others.

Using the group search you can also see more comments and discussions that may interest you. See all here https://connect.mayoclinic.org/search/discussions/?search=Amyloidosis

AL (primary) amyloidosis can be systemic (throughout the whole body) and can affect organs like heart, kidneys, liver, spleen, nervous system and digestive tract. Treatments may include chemotherapy with strong drugs used to treat cancer. Other types of medications can reduce amyloid production and control symptoms. Some people may benefit from organ or stem cell transplants.

What treatment options are being suggested for your husband?

Jump to this post

I was diagnosed with system amyloidosis AL in March @ the Mayo Clinic in Rochester Minnesota. I also have hypertrophic obstructive cardiomyopathy. I am currently on my second session of my second round of chemo shots. I am feeling a little more human😊. I still have dizzy spells. I am checking my blood pressure 3x daily and taking Midodrine for upping my low #’s. Throughout the day. I feel like I’ve been hit with a double whammy, with both of these diagnoses. I am joining to be found a stem cell transplant when they think these treatments have done their job.
Then I am looking forward to chasing my now 3 month old grandson around. He is my main focus in getting back to “normal”.
I only know what I’ve been through but I’ll tell you anything you want to know.
Good luck.

REPLY
peggyjean | @peggyjean | May 18 8:14am

Mayo Clinic in Rochester, Minnesota is the Best. I had a stem cell transplant 2007 when I was 60 & I’m still kicking! Tough road ahead, but doable!🙏❤️🎊

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