Does anyone else have MGUS?

@tallyteresa My MGUS/myeloma journey started when a new nephrologist recognized concerning blood results. Apparently, they had been there for a while, but a previous kidney doctor [associated with an HMO] had glossed over them. When I switched to an out of network dr, she encouraged me to look further into the issues. Hence, a trip to a hematologist/oncologist, where I was diagnosed with the MGUS in Nov 2017. Nov 2018 it had advanced to SMM [smoldering multiple myeloma], which was highly unusual as most MGUS patients go for many years without any change. Nov 2019 my system advanced to multiple myeloma, and I am active treatment for that since August 2021. Guess I just had to charge ahead! I am also a kidney disease patient since 2005, now on dialysis, but that is a result of a rare autoimmune disease, not anything related to MGUS. My treatment plan for both conditions are intertwined, and those two specialists are in good communication with each other to coordinate, thank goodness!

Each day I do the best I can, given my energy levels and motivation. When I describe myself as an "overachiever", it's because there have been several autoimmune conditions diagnosed, plus 3 different cancers. I have been told I am not the normal patient, having a unusual combination of issues, that require creative treatment options. I tell my medical team I am a guinea pig for their future patients with challenging combinations, and that's okay. Being part of research is a great way to look at it, on those days when it seems darker than the day before.
Ginger

I am a relative newbie. My MGUS was discovered quite accidentally over a year ago. I was rear ended while driving and had some neck pain. A CT showed a lesion at C2, some artery blockage and multiple nodules on my thyroid. Routine bloodwork was normal but further investigation revealed that pesky M protein in my blood. It was not found in my urine.
The “lesion” turned out to be arthritis. The nodules turned out to be benign, and the blockage was not significant enough to cause hand wringing. I was referred to the local Cancer Center, CARTI, to see a HEM/ONC doc. His diagnosis was monoclonal IgA Kappa.
I am seen every quarter, this time he scheduled me 4 months out.
My numbers have been relatively stable.
I have type 2 Diabetes. A1C of 6.4. Pretty well controlled by Metformin. I feel good. A little less active physically since I retired last March at nearly 70.
I try not to dwell on the “what ifs” and concentrate on things over which I have some control. Right now I’m fortifying my resolve to take all the left-over holiday candy to the little food pantry. 🙂 Don’t worry…I’ll take some healthy things too.
Best wishes to all for a wonderful New Year!

Patty

Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!

Hi, MGUS and Beyond, friends.
@lynne756, welcome! Glad you mentioned Ferritin. Mine is currently 11 and I don’t understand why it’s low, yet other iron-related scores, Hematicrit and Hemoglobin, are often elevated. Just made a list of the declining ferritin scores in their consecutive dates in my contact list, then made an edited screen shot of this to send to my hematologist.

He advises seeing me every six months but I make appointments with him every three months. My decision due to concerns about risk factors. I’ll see him Tuesday when I hope to get greater understanding of the whole gestalt of various out of range blood test results. Googling each just feels like being in a dark room with a sleeping elephant while only being able to touch its isolated parts. What are the implications of this IgM Kappa MGUS diagnosis with its odd other blood tests? Hope to learn more about it this time while being glad it has been fairly stable but slowly elevating since 2015.
Ginger, your commentary is always helpful. Grateful hugs!

Ginger, how are you doing with the progression? Hope your team has found the right treatment for you.
You are so right that most all of us were diagnosed as our Drs were looking for answers to a different but likely related problem. May I ask how long you stayed stable? I get being the over achiever, lol. One of my Mayo Drs told me I was type A and in "push and crash" mode because I never allowed myself to much slow down during 2 recent cancers. I responded that he wrongly seemed to think that was a bad thing. Until I realized he was right, of course. We can still learn to do better by ourselves, can't we ? I'm surely trying!

Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!

Hope your holidays were wonderful and that 2023 is off to a great start for you!! How long have you known you had MGUS? I think I'm 11 years in now 🙂

Thanks for your response and this conversation, @tallyteresa. My hgb and hct have both tended on the high side of normal. If I do not drink enough water or ginger tea both can go above normal and when both are elevated that high combo gets a new dx name: ERYTHROCITOSIS. I'm due to check my colon. Since I have obstructive sleep apnea and faithfully use an Apap, I do not do colonoscopies. I would, but twice when I had a colonoscopy the anesthesiologists were too arrogant to use my CPAP during the procedure.

Don't worry, if anything happens I'll be here! They apparently refuse to understand that using a pap prevents anything from happening.The American Sleep Apnea Association advises people with sleep apnea to take their AUTOPap or CPAP apparatus with them for procedures. They can not work if anesthesiologists refuse to use them. Instead I will cease any vitamin C, (no Preservision) then do three fecal smear card tests, then an Exact Sciences Cologuard test will be ordered by my PCP. It's been three years since the last one so Medicare will pay for it. I live in Los Angeles and had hoped to drive to the Arizona Mayo Clinic. Mayo insisted I go to Rochester, MN instead. I completely followed their guidance, right down to paying $25 extra for their travel guide's recommendations. Which hotel, even to stay on a concierge floor. Excellent! Though I was there alone (already having been a past caregiver for both parents and husband while their lives ended) dining in the small dining room with interesting others meant I never felt lonely. An extra Bonus was that when I needed to stay longer Mayo covered the extra charge to change Delta flights. I loved being there; exploring their fabulous art collection was a joy around every corner. During my week and a half was time to take in a nearby concert as well as other events: in short be an exploring tourist in the community. People in real winter areas live differently than Californians. Especially in December. Going to Mayo Clinic became a vacation with medical benefits. Were it not for ongoing Covid sequestration I would have already returned. You've given me more to google: full iron panel or anemia panel. Thank you!  Already googled your Dr. A. Hope your colon splenic flexure and calcium situations will normalize. Thanks again!

Hi, Everyone. First I'd like to say Merry Christmas and Happy New Year.
I'm new to this forum, I was diagnosed with MGUS 2017 Light chain kappa IGA I kept telling the dr's that there was something wrong with me other than the usual, I have many things wrong with me 28 altogether ranges from really stiff joints from birth to diabetes to fibromyalgia to osteoarthritis. Although Mgus is the most worrying of them all I had to learn to live with it and now i feel it's just melted into all the other's, as many of them cross over each other for example i ache all the time feels like flu when i'm really bad, my bones ache don't even have the energy to get out of bed but i make myself as my fur babies need feeding. Since diagnoses i have learnt that i can no longer do anything whenever i like i have had to slow down, sometimes to a snails pace it can be disheartening at times but you have to focus on the positive and what's good in your life, and do things in small chunks (if that makes sense). I have been kept a close eye on by my specialist over the covid because my kappa and kappa/lambda ratio is going up all the time, my next app is 12th January 2023 i usually start worrying about know, anyways i hope my post will help someone xx

My CBC was normal....but only if my ferritin was checked....a year had passed....a long time to be living w/low ferritin. I don't understand why my ferritin was so low and I'd like to know more. I'm glad you've been "fairly stable". Thanks for your response. Wishing you all the best.