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Diagnosed with AL Amyloidosis. What can I expect?

Blood Cancers & Disorders | Last Active: Mar 28 1:00pm | Replies (44)
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@luckyme54216

The ONLY symptom I had that brought me to a doctor was that I had the skin lesion. I don’t know if any of my other symptoms are for sure related to AL Amyloidosis because I’ve had them for so long and this is a new diagnosis. But I’ve had protein in my urine for a while but it’s getting higher. And I’m not sure if this is related, but one of my kidneys has shown up atrophied on an MRI of my lumbar spine. I had them checked out after that and the atrophied kidney is functioning. I just can’t remember if it was at 100%. I’m thinking it was fine since I didn’t get any treatment. This has been 2 years ago. I was diagnosed with AL Amyloidosis less than a month ago.

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Rosemary, Volunteer Mentor | @rosemarya | Mar 19, 2019

@luckyme54216, I would like to drop in on you and ask if you have been able to get your appointment with a specialist in Green Bay.

I do not have any experience with what you are going through, however, I am familiar with the stress and fear and uncertainty. For myself, I actually found a tiny bit of relief when my condition had a name. I remember when the hepatologist told me that he had 'good news and bad news' for me. (good news-diagnosis: bad news-PSC(progressive liver disease)

Recently, @bob100 has shared some of his experience about educating himself about AL and its effect on the body and organs.

luckyme54216, How are you feeling? And have you learned any more about your condition?

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