I have MGUS IgG Lambda, low levels of IgA. I’m on the cusp of SMM according to bone marrow sample taken a couple years ago now, however in that time I’ve definitely developed more intense symptomatology (significant spine bone pain, and long bone pain in my legs, as well as kappa/lambda ratio being outside usual parameters, and fatigue that hits like a truck that calls for laying down - something I never had before). I’m wondering how accurate the sample was at that time, considering distribution isn’t uniform throughout the marrow in the body, and they took the sample immediately adjacent to some stainless hardware which has significant thickening of cortical-like bone around it (suggesting to me that perhaps they didn’t get an indicative sample? 🙂).
I’m sorry to hear it’s really painful in your heels.
I believe that because MGUS isn’t seen to be ‘cancer’, many of the non-cancer symptoms that come with having a monoclonal gammopathy are summarily dismissed by many in the medical community (ie:you don’t have cancer so you cannot have other symptoms), however having wrong kinds of cells/antigens floating around will cause some other non-cancer related problems, due to the nature of what they are and the effects they have on other tissues. This is a matter of great neglect imho, where this could be a great area to address for those of us with symptoms related to monoclonal gammopathy itself.
My haematologist looks at me like I’ve instantly grown a second head if I dare mention it in his presence haha 😉