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Diagnosed: MGUS
Hello everyone, I was diagnosed with MGUS after a routine physical, and my doctor made it sound like it wasn't that serious, but my (favorite) aunt died of multiple myeloma about 20 years ago. So, while I'm glad we caught it early, I have so much to learn. I'm still grieving the death of my mother (from a year ago) and it's a bit much to get this diagnosis after watching her die (she died from ALS.) I'm hoping to find some resources and advice here. Thank you all!
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Patty, how wonderful that your numbers have gone down to baseline after gradually rising for the first couple of years! Do you or your doctor attribute that to anything?
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1 ReactionI was also diagnosed with MGUS approximately one year ago. This was found by routine lab work by my rheumatologist. I was scheduled with an oncologist through CARTI very promptly. My bone marrow biopsy came back clear, however, he said he did not get the best sample, but was satisfied. So far, I have only had 2 blood draws. The first there was no change, the second one had a slight change, but the numbers were still OK. However, I have been noncompliant and not followed up with my appointment. I don’t know if I’m doing this out of fear or sheer neglect. But recently, my first cousin was diagnosed with multiple myeloma. Period I am scheduling an appointment for the next week. In the last two months, I’ve had aggressive headaches, blurred vision, fatigue, memory, loss, and severe headaches. Has anyone experienced the symptoms along with this diagnosis? Now there is a component of fear setting in
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1 ReactionI think being very healthy and this hitting your makes it harder to deal with. I've had MGUS for 8 years (70) and I bike 3000-7000 miles most years, including tough bike tours. You can continue being healthy after MGUS, but emotionally it will be there. It sucks, but anyone can be hit with "unknown significance" that likely won't morph into MM based on the 1% chance/year. For some, it is a call to focus on what we have, on destressing, diet, and fun. There is a grieving process with MGUS so it is good to find people you can talk with.
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2 ReactionsThe thing is, this is a complex thing and if your IGG is already showing a significant increase, and your nurse is urging you to get a bone biopsy maybe you should. If your doctor says it isn’t MM and you are in watch and wait mode, then you can relax because not everyone who has MGUS gets MM. If it turns out that you are catching it early and it is MM, this is also good, because you can start treating and knock it back before you end up like many who get diagnosed like my husband, with a broken back and holes in every bone. He was like you always super healthy until he had a back ache that wouldn’t go away.
Either way, my humble opinion is that a biopsy is a minimally invasive win-win. Is there any reason why you would not want to get a biopsy?
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2 ReactionsThank you for your answer, I do feel quite anxious. I have always been a healthy person and basically had very little interaction with the medical profession, pretty much nothing more than check ups and vaccinations, never even had surgery. I am waiting to hear back from my doctor about the referral to a hematologist but it seems like more often than not one sees a nurse a few times before a doctor. I will keep on this
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2 Reactions@rustypenny
Welcome to the Mayo Clinic connect. It’s quite an emotional roller coaster ride when you are first diagnosed with MGUS. We all consult with Dr. Google and the results usually enough to make us anxious. Dr Google is a glass-half-empty gal.
Sometimes it takes a little while to find just the right physician. You want to look for a hematologist/oncologist who is an expert in treating multiple myeloma. MGUS is not cancer. For most of us, the risk of MGUS progressing into multiple myeloma is very low.
It’s important to try and relax as much as you can and not let your anxiety make you feel physically ill. It will. It will possibly even raise your white count. Your hematologist/oncologist will decide what kind of diagnostic testing you should have. You don’t need to react immediately until you get all the information and have a chance to sit down with him or her. Chances are, you will be in watch and wait limbo with the rest of us as usually MGUS does not require treatment. There is a lot of variation in the approach that different positions take even in terms of diagnosis. Not every MGUS patient requires a bone marrow biopsy. I was diagnosed over three years ago and have opted not to get one unless my lab work indicates that there is progression. Hopefully that will never happen. My numbers have actually gone down to baseline at the time of diagnosis after rising gradually for the first couple of years. I don’t expect my MGUS to go away, but I’m hopeful yet it will not become problematic.
You mentioned that you have not seen a hematologist. Is a referral to a hematologist/oncologist in the works for you? Have you spoken to your physician?
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3 ReactionsI was just diagnosed with MGUS after routine blood work and then some more. I have been googling and reading everything I can. My Kappa/lamda ratio is 38.91,my IGA is low and my IGG is high, IGM is normal. All my protein levels seemed to have jumped up in the last month which may indicate infection and inflammation. I didn't get to see a hematologist but the nurse really wants me to get a bone biopsy. I feel like this could give a false baseline-having read several entries here I am not sure what to do. Thanks for any insights.
Thank you so much for your thoughtful reply. I am glad you have a good understanding and your MGUS is stable.
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1 ReactionIf you are concerned about your water, you can collect a sample in a clean glass container and send it in for analysis (to who varies by local and you would likely pay. Your State may have water quality info). Neurologist would be the doctor to see. MGUS is considered asymptomatic, however, neuropathy is one of the potential early symptoms. I have polyneuropathy (8 years, 70 yo) diagnosed about the same time as MGUS; in my case a lack of sensation, less feeling in my lower legs and decreased pain that hasn't worsened over time. If changed sensation is affecting your balance it would be good to get PT for that. MGUS is a waiting game; progression to SMM or MM is only 1% a year so for most people it stays as MGUS. It is caused by a mutation(s) in bone marrow plasma cells and generally no known cause. Recommended are a healthy diet (low sugar and such), regular exercise, managing stress/sleep. Some people take curcumin supplements (an ingredient in turmeric). Here is some MGUS info: https://pmc.ncbi.nlm.nih.gov/articles/PMC7604635/#:~:text=Monoclonal%20gammopathy%20of%20undetermined%20significance%20(MGUS)%20is%20a%20common%20benign,(MM)%20and%20related%20disorders.&text=MGUS%20is%20considered%20asymptomatic%20but,with%20peripheral%20neuropathy%20(PN).
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4 ReactionsI was just diagnosed with MGUS, low risk, IGG type. Two questions!!!
1) Can the feeling of walking barefoot on bubblewrap be from MGUS? My Hematologist says no and wants me to see a Neurologist. Does anyone else have this sensation? I do not have it with shoes on.
2) If I suspect I got this from a new home built on a cleaned up Army base, should I move, or is it too late? I have questioned the cleanup team and they assure me it was checked thoroughly and our water is clean.
Thank you to anyone who can help!