Does anyone else have MGUS?

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!

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!

It gets easier as time passes to deal with the diagnosis, to understand the plusses in knowing. We live longer being actively monitored.
Any other cancers are caught earlier as well as myeloma if we ever progress to that point which is a huge positive. Early treatment helps!!

Hi Mitten, sorry to hear your diagnosis, my brother died from MM he developed from being exposed to Agent Orange in Vietnam. Because of that, my Oncologist naturally zeroed in on MM when we discovered I had. MGUS. My precancerous cells fooled her and are progressing into a rare form of Non Hodgkin’s Lymphoma called Waldenstrom Macroglobulemia. My platelet count is also low but still in low normal range, so I looked for foods that can increase them. I also looked for foods to avoid that reduces platelets. Because of other blood issues “I’m damned if I do and damned if I don’t” as the saying goes. You see, I tend to throw clots because to many platelets stick together. I’ve thrown clots that have almost killed me in fact. So my options are to either bleed to death from lack of platelets or throw a clot big enough to kill me because they’re to sticky. It’s a delicate balance, my last count was 170,000, low level is 140,000, 50,000 is a disaster waiting to happen. So as the saying goes, “Be carefully what you wish for, you just may get it”!!!

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, 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

I also recently receive a diagnosis of Walderstrom’s. I am monitoring my lab work but you seem to be more advanced in your analysis. Can we chat?

Hi @mariko572, you may wish to connect with other members living with Waldenstrom’s in this discussions:
- Waldenstrom macroglobulinemia Recently diagnosed https://connect.mayoclinic.org/discussion/waldenstrom-macroglobulinemia-recently-diagnosed
- Waldenstrom macroglobulinemia: What to expect during watch & wait? https://connect.mayoclinic.org/discussion/waldenstrom/

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!

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!