I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
I was diagnosed with lupus and MGUS after my covid vaccination. No idea if there is a link. I have really bad neuropathy. Does anyone else experience this? After 2 neurologist. 2 rheumatologist with different diagnosis I am going to Mayo on the 21st of this month to the experts. Hopefully I will get a path forward.
Hi there, I was diagnosed with MGUS in 2017 because i went to the Dr knowing there was something wrong with me so, blood test after blood test for over 18 months and 3 HIV tests later they decided to send me to the Hematologist for high inflammation markers and white blood cell and low red blood cell count. The Hematologist said my IGA Kappa light chains were high and my Kappa/Lambda ratio were abnormal, still no name for all this strangeness, so i got to researching and next appointment i told him i had IGA Kappa light chain MGUS and he looked quite surprised and i said i google a lot. Well he agreed with me and said the reason i didn't tell you was i didn't want to worry you, whatever! Anyways since my first blood test my Kappa light chains have gone up from 39.40 to 91 and my ratio has gone up too last results they jumped up by 30%, but they still don't seem worried so i try not too but every time my next bloods are due i start worrying, my bloods are next month, i'm not sure what to think if they jump up again and at what number should i start worrying does anyone know? Thanks in advance Michelle.
I’ve been living with it since 2010 and it’s amazing how many professionals have never heard of it. I continue with my blood work every six months. My oncologist suggested that I do a bone marrow test to see if we could identify a link to what type of cancer my MGUS would produce (not sure if I’m saying this correctly) but luckily there was no dna links. My numbers have remained pretty stable over the years but it can cause a lot of anxiety while your waiting for your results.
Jump to this post
@sal99 There is no known link between lupus and MGUS after vaccinations for COVID, that I have read about. What many people may not understand, is that lupus is an autoimmune condition. When we get a vaccination, our own bodies are triggered to respond to a known condition like COVID, to prevent it. Underlying conditions that may already be at play in our systems might get prompted to also "raise their heads". They were already there, laying dormant in effect. Our body's response to the vaccine might kick another condition into being active.
If you read the link above from Mayo Clinic about MGUS, you will see there is not a definite cause. I am glad you will be going to Mayo Clinic to the experts. Which campus will you be at [Arizona, Florida or Minnesota]? I will be interested to hear what you find out!
Like someone above mentioned, you need to get your daughter to the best hematologist / oncologist you can find, preferably at a major medical center. I was diagnosed in early 2022 after a rheumatologist did some blood work for joint pain that I've been having for a few years. I consulted a friend who is a retired oncologist and they told me that MGUS is rare and not to fool around with local docs because they don't see MGUS enough to really know what they are doing. I now have a great doc who did all of the initial testing and checks my bloodwork every 3 to 4 months. He has also been great about explaining everything to me. I am stable for now, but I am still battling the extremity joint pain. I am super-sensitive to many medicines used to treat the pain and one even caused my airways to inflame causing major breathing issues; although I don't know if that had anything to do with the MGUS.
I don't know how old your daughter is, but I was told that most people don't develop MGUS until their 70's or older. And, that they usually die of other causes before developing into smoldering or full-blown multiple myeloma. Those of us who are younger have a higher chance of actually developing into the full myeloma disease, although it may take 15 or 20 years for our cells to reach the numbers where they actually treat the disease. Monitoring is so important because we don't want to have any lag once our cells begin to spike into the treatment range.
My oncologist always encourages me to get my vaccinations. I doubt he would be doing that if there was a correlation between the vaccines and the disease. At one time, my Ig numbers were VERY low and my pulmonologist was extremely worried about me catching anything, but they have since come up a bit. My numbers which are not great by any means, were still up after I got my last bivalent Covid vaccine.
I wish your daughter all the best. I'm puzzled that they are pushing treatment at this stage. I would get a third opinion, because I'm not sure why the University would want to treat at this stage. Then again, I'm not a doctor. Have they checked for bone lesions?
I had MGUS before Coid was even a "thing." I know many, many others have as well, actually going back to the 1960s when Dr. Robert Kyle at Mayo Clinic coined the term. I have read countless papers on causes and studies and have not seen one say that having Covid or getting a Covid vaccine or booster had anything to do with anyone who was later diagnosed with MGUS.
Yes, and at age 73 still in MGUS stages, no real symptoms but a bit of neuropathy in my feet. This expert explains it quite well in her YouTube video if you really want to get into what it is, how it does or does not progress, etc. This doctor is tops in the MGUS/MM field and works at the Dana Farber Cancer in Boston. If you go to YouTube you can find MANY very credible videos that explain in even more detail what MGUS is and the various tests, and symptoms one can get over time, etc.
Michelle, I asked my hematologist/oncologist how high my numbers and Ratio would have to be for me to start getting treatment and he assured me that I wasn’t even close to that yet. I opted not to get a bone marrow biopsy because I feel like getting my bloodwork done every three months we’re going to be on top of that. If my numbers start to get crazy, sure. I’ll do it.
I feel good which probably helps.
Strange that you wouldn’t get an MGUS diagnosis from your doctor and you had to do your own research. I probably sound like a broken record, but I think it’s really important to have a hematologist/oncologist that you trust. You should ask those questions about the plan in the event your numbers get “wonky” and how high would that be? What would his/her strategy be? If it’s going to be a while before your next appointment, then you can call so you can speak to your physician directly and ask your questions. I always have a long list.
I would also say, whenever you have to deal with any medical event ie, new specialist, ER doc or anytime you get a X-ray, CT scan etc, tell them you have MGUS. They will play more attention to your bones and will alert you of concerns.
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In