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DiscussionAnyone else have Symptomatic MGUS?
Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)Comment receiving replies
Replies to "It seems all that registers is waiting and getting the worst answer of all, it sounds..."
Nice sentiment 🙂
I agree there’s sometimes a psychological/psychosomatic component that can influence daily life..that is, until it isnt, and the search for physiological symptom explanations is very warranted.
Just had kidney biopsy yesterday, considering this MGUS has worked it’s way to MGRS by all intelligent estimations (haematologist, nephrologist, and I do include myself here), and with the development of even more signs and symptoms, it may indeed be the case that a paraneoplastic syndrome called POEMS as a result of monoclonal gammopathy https://rarediseases.org/rare-diseases/poems-syndrome/ has evolved, and these docs are now very pleased I’ve been recording/reporting any noticeable change, because they weren’t, until I gathered enough evidence to present my case as being potentially a paraneoplastic problem.
That’s the quintessential ‘other’ besides development of cancer, that must be watched for in MGUS.
Anxiety - interestingly - hasn’t been a part of my symptomatology, and never has been with any physiological disease process or injury; my approach is to investigate, treat, observe outcomes, and if outcomes aren’t reached (satisfactory recovery/increase in function), then restart the process. Personally, the last thing I conclude is psychosomatic origin, considering my approach does not naturally include anxiousness (that ‘worry response’ was trained out of me many moons ago, and usually after an initial slight surprise, I’m in objective discovery mode quite quickly).
Last BMB/A on 9th November confirmed progression so I’m a hair away from SMM (along with the slowly increasing serum m-spike), however the other symptoms all point towards paraneoplastic change (which I’ve informally and not-technically-correctly dubbed being ‘allergic’ to the existing ‘few’ cancerous plasma cells in bone marrow that is contributing to a bunch of parallel symptoms, to help explain it).
Anyhoo, I’m super glad I have kept looking, and rejecting the unfounded assumptions of my former haematologist (whom I dubbed the ‘office decoration’ for all the efficacy he had around the place) that there was nothing else happening besides MGUS, because that seeking approach is likely going to significantly improve my outcomes.