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I had my visit to Mayo yesterday, and everything is stable. Actually all the markers for mgus are within normal range, and looks like they're not detecting it in my bloodwork. This has been since last year. My kappa/lambda ratio also has returned within normal range. I'm thinking it's gone, if that's possible?? I thought once you have it, it remains for life.
They didn't even give me my Dr....I saw a nurse who basically read back all the results, which I can easily do from my portal. No physical exam either. No explanation for fatigue or foot and leg aches/burning. I'm seriously considering not following up anymore.
I go to my primary in 2 weeks, just usual annual check up...I feel like why bother?? I'm grateful my labs are looking good, and that's all they go by. So no point in complaining about aches and pains. The painful bump above my heel, no explanation either.
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dazlin, I have had MGUS for two years now (also have Waldenström's non-Hodgkin's lymphoma) but my neurologist said it would take about 3 years to heal the nerves that are causing my burning, pain, tingling and numbness from my neuropathy after my IgM, and light chains are normal - which is not yet. So, I think it's a waiting game, sorry to say. But everyone is different. Do you have a neurologist who has experience with MGUS, DADS, CIPD neuropath? Most seem to deal with stuff like diabetic neuropathy - which is true of my Neurologist, but he is consulting with a colleague that does (and did my EMGs).
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@dazlin Stable numbers are a good thing! An early holiday gift for you, healthwise!
Trends in blood tests are the best way of monitoring our chronic condition, which MGUS is. As you have read here, we often go many years with no advancement of the disease process to smoldering myeloma. Many of us have quarterly tests that eventually stretch out to every six months. You certainly can ask your team at Mayo why there was no physical exam, and listen to their answer. My hematologist oncologist will check my lungs and heart each time, plus lymph nodes, pulse, and legs for swelling.
Ask your primary about the fatigue and foot/leg burning. He may want to have some baseline tests done, or look at what Mayo did. Has Mayo addressed these with you in the past?
Ginger