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Diagnosed with AL Amyloidosis. What can I expect?
Blood Cancers & Disorders | Last Active: Mar 28 1:00pm | Replies (44)Comment receiving replies
luckyme54216 @luckyme54216, I want to welcome you to Connect. I can understand why you have so many questions about your diagnosis. I am also happy to hear that your doctor has referred you to someone who might be able to provide a second opinion. I don't know anything about AL Amyloidosis. I did locate this information from Mayo Clinic that provides a good description of the diagnosis and treatment for this rare condition. I also read that Amyloidosis is often overlooked. And that Mayo Clinic has doctors who specialize in diagnosing and treating protein disorders of the blood, such as amyloidosis. This could be an option for another opinion for you.
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
What kind of symptoms are you experiencing? When is your appointment?
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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.