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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 19 hours ago | Replies (7049)

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@oldkarl

Julie, you have a rough one. Have your doctors checked you for various forms of amyloidosis? What you describe is rather typical for ATTR, excessive serum free light chain deposit disease, and many others. It is still a rough road, the shock absorbers are better if you know what is happening.

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Replies to "Julie, you have a rough one. Have your doctors checked you for various forms of amyloidosis?..."

Thank you for your reply oldKarl,

i read about it the past few hours and will be talking to my rheumatologist dr in a few weeks. He is exteemely concerned, sent me to other specialists, even had a lung biopsy. Its in my left upper lobe, the surgeon i saw said the biopsy another dr did was inconclusive so if it doesnt get any smaller by spring ghe wants to perform surgical biopsy. The ATtR diseases makes sense in my case, GI, lower back pain at kidneys, bladder infection last year caused sepsis and new horrible shellfish allergy. The overall weakbess, neuropathy, hand, and leg pains are worse than my normal arthtitis pains. Ive been a good patient keep trying to be positive and, take short walks on beach when i can. Your reply is so appreciated, many thanks!!! Hoping you are feeling as well as can be yourself.

Julie