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

Posted by jenzo921 @jenzo921, Nov 3, 2024

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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Colleen Young, Connect Director | @colleenyoung | Nov 14, 2024

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?

dandgk721 | @dandgk721 | Nov 15, 2024

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

kabue9 | @kabue9 | Apr 4 3:45pm

In reply to @colleenyoung "Hi @jenzo921, I expanded the title of your discussion to reflect your question. I can imagine..." + (show)

I have the same issue...specialists cannot fund anything wrong...it was first due to constipation issues from opioids...don't take them anymore...constipation is cleared now..any suggestions the pain is severe..please assist & thanks

Colleen Young, Connect Director | @colleenyoung | Apr 11 5:09pm

In reply to @kabue9 "I have the same issue...specialists cannot fund anything wrong...it was first due to constipation issues from..." + (show)

@kabue9, if you would like to seek a second opinion with Mayo Clinic specialists, you can request an appointment here: http://mayocl.in/1mtmR63

I hope you've found answers.

kayabbott | @kayabbott | Apr 12 8:23am

I have MGUS (BMB 15% but oncologist says still MGUS) was tested last summer for amyloidosis because of fatigue, GI problems (collagenous colitis flares plus constipation, but no pain), and new stage 3a chronic kidney disease. The abdominal fat pad (an easy test) and colon tests with Congo red were negative. My colitis flares disappeared after being on Budesonide a few months. I'm OK now, and suspect the fatigue and flares were due to increased stress, the nephrologist putting me on Lisinopril (no ACE II or statins with c colitis), and effects of 2023 covid and associated long covid. Being 70 doesn't help, but I have always been very active and my diet is mostly FODMAP, gluten free (celiac), low in sugar, salt, and preservatives, but otherwise fun.

kabue9 | @kabue9 | Apr 12 2:57pm

In reply to @colleenyoung "@kabue9, if you would like to seek a second opinion with Mayo Clinic specialists, you can..." + (show)

Do you provide virtual visits?

Thanks

Colleen Young, Connect Director | @colleenyoung | 5 days ago

In reply to @kabue9 "Do you provide virtual visits? Thanks" + (show)

Mayo Clinic welcomes both new and existing patients for virtual and in-person care in adherence with federal and state executive orders and guidance. Virtual care is available for out-of-state patients IF the provider you are seeing is licensed in the state where you live.

Video and phone visits can be great options for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs.

Here is more information and how to get started with submitting an appointment request: http://mayocl.in/1mtmR63

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