Lymphedema and Waldenstroms Macroglobulinemia

Posted by lorkish @lorkish, Nov 3 2:02pm

Has anyone else been diagnosed with MGUS (I had M spike) and then Waldenstroms Macroglobulinemia with MYD88 gene mutation (after undergoing bone marrow biopsy - OUCH!) and then Lymphedema? This has been my case. I am at Stage One lymphedema. Not treated for WM as yet. All so weird and believed to have been caused by the 2021 J&J Covid shot.

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I too believe I was caused by the COVID shot but doctor strongly stated this couldn't be so. I have been diagnosed with MGUS then Waldenstroms after bone biopsy. This is all so new to me. Doctor stated I would not be treated with anything until disease progressed and we would wait until then.

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I have to wonder if my WM was also caused by covid shots. The VA hospital discovered a proliferation of IgM proteins in 2018 and has continued to monitor as the IgM level rose from 300 to 600 in January 2023. A bone marrow biopsy was performed in Feb 2023 that determined that I had WM. The VA has continued to watch and wait, and as of September 2024 my IgM level has increased to 873. The doctors still do not want to treat my WM telling me that I have smoldering WM. It looks to me like my IgM is increasing at an accelerated rate.

Considering the timing and increased acceleration, I also think that my progression from MGUS to WM was caused by covid shots. I'd be interested in hearing from others who have experienced similar progression after getting covid shots.

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@polly123

I too believe I was caused by the COVID shot but doctor strongly stated this couldn't be so. I have been diagnosed with MGUS then Waldenstroms after bone biopsy. This is all so new to me. Doctor stated I would not be treated with anything until disease progressed and we would wait until then.

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In my case, I also suffered Transverse Myelitis in 2007 after getting the Hepatitis B vaccinations. So going forward, no more shots of any kind for me. I have seen four different Hematologists thus far for MGUS/WM. So important to get another doctor's perspective and expertise.

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