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?
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My daughter is getting aggressive treatment due to test showing protein in blood and urine. She is seeing a kidney and hematology every week. Currently on 3 chemo meds. This week will be a follow up after being on the meds after 3 treatments. Hopefully it will be a good visit. 🙏
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@psue4 Please check in and let me know how that appointment goes! What chemo meds is she taking, may I ask?
Thanks, this was very reassuring! PCB
You're welcome. There are many other reassuring and accurate videos on YouTube. Just be sure not to look at anything by non-doctors. MD or DO only – preferably specialists in MM, MGUS, etc.
Cytoxan, Dexamethasone, Bortezomib
All low dose, pill form.
Is it possible to be private when answering you?
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?
Doctors are not ruling out her illness from the Covid virus! She recd the J & J, 2 years ago, the virus was within 8 months? Mystery, huh?
@psue4 Yes, simply click on my profile, and choose "send private message".
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 am 68 years old. I was referred to a nephrologist because of weight loss and declining kidney function, eGFR 30. I was diagnosed with Light Chain Deposition Disease following both kidney biopsy and bone marrow biopsy. My serum Free Kappa Light Chains was 160.67 mg/L with a 8.35 Kappa-Lambda Ratio. I hope this information may be helpful to you.
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.
You are doing the right thing. Best wishes! My daughter started out with high blood pressure, low sodium which lead to a stroke most likely from the covid virus. Dr say! Everything escalated after that. Praying for answers soon.
My MGUS was also found by going to a rheumatologist after a year of suffering with joint and bone pain – he found the m spike. Told me it was "probably nothing" and sent me off to see my hematologist/oncologist of many years ago since I had thyroid cancer in 2007….and the dx was MGUS. Although my hematologist doesn't think my bone/joint pain is from MGUS…but says, maybe? I have had extensive testing that I really don't understand. I had the full body xray which did show any lesions but the doctor said it showed lots of degenerative changes and if he was looking at the xray and had to guess my age, he would guess much older than my age of 55 (great…)…I had bone marrow biopsy…Kappa Light Chain IgG – I was anemic (no ferritin stores, had to have 2 infusions, good now, but now I have low platelets). I have no IgA – apparently my body doesn't make it – explains alot – lot's of ear infections, UTIs….anyway, I see my hematologist on Monday….making my list of questions. I am full of aches every day,,,I am so fatigued…I push myself to get through everyday. Like I said, it was a year before MGUS was found. I almost lost it when one doctor suggested I start meds for anxiety – bc he thought this pain was coming from my thoughts as our mind / body connection is strong. While I believe that is true….please….there is a something happening to my body! Nobody was finding anything. My GP and the rheumatologist decided my pain should be treated like fibromyalgia pain – and they put me on duloxetine (similar thought process to what the former doctor was trying to say but delivered in a way that I could accept, understand – makes a world of difference). Duloxetine has helped, a bit. All the best to everyone here.
Wow, you just told my last 9 years, started out heat intolerance, dehyd, ESS diag after 9 months of trying to get them to understand it wasn't in my head, sudden weight loss after few years struggling with digestion and gulping milk of magnesia, killed off digestive and restarted it with FODMAP diet, after 1st C19 moderna Vacc arthritis in left hand was first thing to start having real issues, nerve pains like twisting pinching in random locations lasting from few sec to several mins at a time, booster 1, did not do booster 2, am almost blind from light sensitivity to blue and white, reds yellows don't nearly as much, driving at night is real tense with migraine following, bright sun and day sky without shades triggers same, almost deaf in right ear from tinnitus, the list goes on, been on 2400 mg of neurontin for prophylactic for migraines, tried discontinuing on slow taper 3 years ago and that's when 1st experienced the twist pinch pain that did not respond to mechanical message, but if I lightly brushed a fingernail across the area of pain, even a few minutes between spells of pain, it was like I brushed it with a fire, burning pain flash triggered by light brush of an area the size of this . it's is bizarre, but now it pokes through the neurontin, now after my 2nd shingles booster triggered a full day of bone pains in both forearms, told doc to please test me for inflammation markers, came back pos developing light kappa, now raised level has doubled in last 2 months, low D Calcium ok, have to do imaging forearms and shin bones, but told doc to do more in depth testing genetically and all, she's on vaca til 23rd so I wait, retired mechanic benzene and chlorinated hydrocarbon exposure for over 25 years, before that I started at 13 instead of high school 5 years industrial refinishing, sandblasting and painting, we used to wash face and arms with laquer thinner, but heavy metals is fine, and am just starting on this, january was 1st test I had, Deacon Mitch.g
I found this link to clinical trials open and have yet to open for MGUS:
Maybe, you'd like to scan them to consider participating OR as I did, to learn what may eventually be considered in the future (or ruled out) for us MGUSers.
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