Could my Stomach Pain be related to Waldenstrom’s or amyloidosis?

Posted by jenzo921 @jenzo921, Nov 3 7:02am

Hello. I know this is a shot in the dark, but that’s where I am. I am 57 and was diagnosed with Waldenstrom’s Aug 2021, confirmed with a BMB. My IgM has hovered between 4500-5000. It is currently at an even 5000. I have anemia and rec’d iron infusions. I been watch & wait, with mild fatigue.
Here’s my question. About the same time as I started the WM journey I began having sharp pain in my abdomen on the lower R side. I have altered diet to rule out any type of issue caused by that. This pain comes with no rhyme or reason and there is enough of a lump that comes with it that my oncologist was prompted to send me to the ED for fear of an appendix issue. I have been tipped upside down and scanned every which way to determine the cause but to no avail.
To be clear, the pain is severe, it is not a cramp. I cannot walk, or drive when it is at its most severe. This has led me to a gastro Dr that sent me to a surgeon to have a hernia repaired. Because there was in fact a tear, it was repaired, but 2 days post-op I had the same pain and swelling, excruciating because of the recent hernia repair. My PCP questions whether or not the surgery was even necessary as that was not the issue and many have tears that do not require surgical intervention.
Soooooo my question. In my research I have found, that albeit rare, some people have experienced amyloidosis in the GI tract. I’m wondering if there is the chance of possibility that this could be triggered by a blood flow/viscosity issue?
Sometimes I have days of pain and sometimes it’s 3-4 hours. It is severe enough that I have had to pull over on the highway and have someone pick me up. I am at my wits end. Any suggestion would be appreciated.

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Hi @jenzo921, I expanded the title of your discussion to reflect your question. I can imagine you are at your wit's end experiencing such debilitating pain with no warning and no cause.

Is there any update since you posted? Have you brought your thoughts to your hematologist?

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Our experience with gi amyloidosis was different. That said you may want to suggest that a Congo red stain test be done on any tissue that might have been removed during surgery. If tissue positive for Congo red the further work up for amyloidosis needed. Prayers that you may find answers. D

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