Does anyone else have MGUS?

Yes

Thank you, Colleen. I’m glad you found something about my comments worthwhile and hope they can be helpful to others. My rheumatologist diagnosed my IgM was elevated. That meant I had MGUS. He sent my test results to my PCP who should have sent me to a hematologist but she didn’t. So I chose one at random and he said goodbye before saying hello. He did very few blood tests. Didn’t like him. That’s why I went to Mayo Clinic, though it turned out to be more helpful with other health concerns. Dr. Lusk knew less about some things than I did and he was not helpful with hematology. Next I went to City of Hope. Dr. Rosenzweig said I had leukemia. Why do you say that? Because I don’t have MGUS in my computer pull down list. He really said that. Obviously I was in the wrong place! Then I went to hematologist James Berenson. He knew how to game the system to get $300,000 annual income from drug companies for testing their new products on patients. (Check docs in ProPublica Dollars for Docs.) He wanted to make me into one of his test subjects. On my first and only visit he asked me to sign a 14 page agreement giving him permission to test things on me. No thank you! Of course he was eager to do a bone marrow biopsy! Time to leave. He had already revealed his true color. 

After this round about journey, eventually I got a referral to a hematologist I like. It's been a couple of years with him so far. He's ordered a variety of blood tests and genetic studies. (All genetic were negative, which is good. At least he looked.) More specific diagnosis is that I have IgM kappa MGUS. A painful bone marrow biopsy has not been otherwise been recommended since diagnosis seven years ago. A CT scan was done. See Robert A Kyle's writing on Bone Marrow Biopsies, 1987. He put the US in MGUS and is a great gift to our field of need He did not recommend BMB for IgM MGUS. Some patients may need this test, which will be worthwhile to undergo when they do. A friend who had it said he wished he had been under anesthesia for the procedure. 

And now for something completely different: I'm in a quandary about a question to my hematologist which he did not answer. I had asked why my ferritin is low and his conversation went to all sorts of things. I found myself subsequently sending him contacts which could be helpful to his Prius or his broken refrigerator. Poor guy. A storm of things went wrong in their house, and he loves playing ice hockey(!) Don't you love non-sequiturs? 

However I still do not know why my ferritin is low. What do you suggest? Just write him a direct question repeating this concern? Sometimes one does not know how to gently be repetitive without fearing coming across as assertive. Sorry for this long journey-in-healing diatribe, dear Colleen. Cheers! Happy healthy new year! 

Welcome @gilash1965. I moved your post about living with MGUS for the past 2.5 years to this existing discussion:
- I'd like to connect with other MGUS people: https://connect.mayoclinic.org/discussion/mgus-diagnosis-1/

I did this so you can read previous posts and connect easily with members like @bonniecanby @anng53 @pdyer134 @ea1 @anniemaggie @pmm @mitten @lynne756 @tallyteresa @raye @red7 @michelle151 and many more. They can share their experiences of whether or not they have had a bone marrow test done or not, when and why.

It sounds like you've done due diligence in getting a second, third and even fourth opinion to feel confident that a bone marrow biopsy is not necessary for you at this time. Is that correct?

Greetings
Two and a half years with MGUS, feeling great, in fact all the normal blood tests are very good
The monoclonal protein increased in two and a half years from 1.9 to 2.3 - the hematologist asked to check bone marrow, I did not agree. After consulting with 3 different doctors they claimed that there is no reason to perform this test when the protein is at this level. I will mention that my IGG has been constant for two and a half years at 2700. flc 2.9
your opinion ?

Thank you, dear @coleenyoung. I’m glad you liked my December 17 post and found it useful. Though I had a plan of what I hoped to discuss with my hematologist, the goal of better understanding the whole gestalt of the sleeping IgM kappa MGUS elephant was not achieved. He checked my kappa, said most scores were better, then wrote that I feel that I do not have a wholistic understanding of this diagnosis.

My hematologist must have found me a sympathetic listener because he then unloaded on what he has been through lately: rain leaked on their piano, termite droppings were discovered inside their house, the refrigerator died and a new replacement would not be available for a year, the catalytic converter on his Prius was stolen. What a disaster list! A responsive patient, of course I took it all to heart and sent contact info for my mechanic and appliance repair guy.

However I still do not understand why my ferritin is low or whether there is anything to be done about it. Next week I plan to ask my PCP about that.

May we begin this new year counting our blessings. Wishing everyone a happy, healthful and peaceful new year.

Thank you !

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/

@michelle151 Welcome to Mayo Clinic Connect. It is always an interesting journey when we have health issues. Having multiple concerns sure can feel like we are climbing a steep mountain with little help along the way, right? Getting through day by day, we learn what will be best for us at any particular time. I appreciate you sharing your experiences on what is working for you. It's not an easy thing to accept slowing down and modifying our life, but giving up is not an option.

As you have proven, getting a diagnosis of MGUS, we can go many years without significant progression. The watch-and-wait approach is the most common to do, and I'm glad you have a specialist you trust; that's so important!

Good luck on that appointment in a few weeks. Will you come back and let us know what you find out, please?
Ginger

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?