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Does anyone have MGUS (which is a blood disorder) with symptoms?
One of my blood tests that my neurologist did came out that something was not normal. I was told that I have MGUS. Most people with MGUS do not have symptoms, but I do. My bones ache and I have a stress fracture on top of my foot this year.
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As far as MGUS, I would suggest you get your diagnosis by a qualified Hematologist/Oncologist. If the labs are too far out of range, the next step may require more testing like PET scan, Bone Marrow Biopsy, etc, to rule out your MGUS issue has advanced to MM or WM. Or maybe they think the bone pain/fracture is not related to MGUS, in which case I would think they would refer you to Orthopedic type Dr to do more testing. I'm no doctor, so take all this with a grain of salt. This is just my experience from three years of MGUS and now WM. Good luck getting proper treatment.
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2 Reactions@norac, you might appreciate these MGUS related discussions:
- MGUS with bone pain? https://connect.mayoclinic.org/discussion/mgus-with-bone-pain/
See all: https://connect.mayoclinic.org/group/blood-cancers-disorders/
Are you now in the care of a hematologist oncologist to manage MGUS?
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1 ReactionYes, I do see a hematologist in my town. My body aches, which my primary care doctor thinks that my symptoms that I am having is related to MGUS. My last two visits with my hematologist told me that my bloodwork numbers were still okay. He informed me that most people are asymptomatic. I asked him what if I don’t follow that, and I fall in the small percentage that has symptoms. He replied that we don’t do anything but just monitor and see if the results change.
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2 ReactionsYou are not alone, “waitful watching” is where a lot of us are because the treatment can be worse than the disease.
I do have symptoms that have required more frequent monitoring but I am right there with you.
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3 ReactionsI was diagnosed with IGG Kappa MGUS 6 years ago. Not only do I have tooth ache like pain in my bones but my joints hurt. When I told my hem-onc, he said ask your GP to test for arthritis, but it’s not rheumatoid arthritis. I have tried to do research to find the symptoms that those small percent have… but here is the only place I find correlations.
@dmdinapoli81
two years ago I was diagnosed officially with MGUS, although in looking back at all my blood work for a few years I see it was in my blood, never discussed by MD, in 2017 at low levels. Why do most physicians treat this like a nothing disease. It is frustrating as I am sloowly developing things like protein in urine, fatigue and what I would call a little fog mentally. No one gets upset or thinks these things mater. MY oncologist did request a 24 hour urine with my next visit. But truthfully I do not feel like myself. Anyone else have these things ignored and suggestions. Or do we just keep plugging along. Also how does one differentiate between age related symptoms and MGUS symptoms that may be progressing. Thanks Chris
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2 ReactionsI have forgotten to mention all this started with a fractured Hip and replacement. I did not feel any symptoms until my bone fractured. That is when it started.
I had a fractured hip and replacement. That seems to be the start of the MGUS journey. Turns out that my orthopedist told me that the fall did not cause my hip fracture, that my hip had dissolved into powder and that is why I fell. So that was 1.3 years ago that my hip basically collapsed. Very different than a fall caused the fracture. I have also been diagnosed with Vit d deficiency and osteopeniawhich is something I should be paying more attention to. Other than that, life with MGUS is life with alot of watching and waiting.
@sunsetchris
It is imperative that you are your own advocate. Many doctors will account symptoms based on typical age related conditions. I was diagnosed at 38 by happenstance by a new Gastro. I have good insurance so I asked for a baseline which was have been doing since then with all my specialists I see (It doesn’t hurt). So if one says you probably have RA you can say Nope Don’t have arthritis. Although the iSTOPMM study had a large group between 40-49, I will make another post to show the gist of the study. But as a guide I tell people a full bloodwork plus a full immunoglobulin workup and 24hr urine. Depending on your m-spike/IG* level and protein level in the urine will depict the schedule. I do every 6 months for blood and year for urine.