MGUS Symptoms: What symptoms did you experience?

@suppiskey2surv
Thanks for the reply. I guess I need to do a lot more studying. My reading and talking with my Hemo/Onoc had me believing that now that I was officially diagnosed with SWM, I had a clearer path forward to treatment when I develop symptoms. It never occurred to me that MGUS is separate from SWM and that when SWM turns into WM, the treatments I get may not help because the issue is coming from MGUS and not WM.
I'm sorry to hear about your testing difficulties. I haven't seen that too much in my case. But every test they do bring up unrelated problems which require more testing. My last PET scan showed a hot spot, but not related to SWM. They didn't hesitate to do the testing needed to prove it wasn't cancer.
Good luck to you.

@pmm My back
Itches off and on, and I wake up at about 5 with a light night sweat, they want to do a Bone Marrow Biopsy, I have an M Protein if .5. Should I worry

@dcuste

Good luck, my friend. MGUS, I believe, from what I've read, can sometimes be associated with peripheral neuropathy, just to name one thing.

My mantra these days is to advocate for those we love but also for ourselves, if we feel good enough to play both roles, simultaneously.

🫠

@sally4910

Mine too! I'm, by no means, a doctor OR a nurse so all I can do is try to share my experiences. That's all most of us can ever do. Suffering in silence, and being disrespected by friends, family and even far too many in the medical profession these days is totally unacceptable; especially if there's an explanation for a lot of this out there. Probably not much in the way of treatment for MGUS, per say; but treating only the symptoms of it is NOT responsible medical care if there is a reason for them somewhere. Gaining, at least at a minimum, a definition for them would help me understand it more.

Seems MGUS has a variety of symptoms or maybe not symptoms related to the “weirdness”. For us it’s a day by day, month by month, year by year confusion.
Nov. 7th I will be getting my 6 month blood draw. Always a little anxious time for results.
Since I’m newly diagnosed in 10/24 and my M-spike was low last May, my hematologist recommended yearly exams but I could still get 6 month lab work if I chose to do that. I agree as I’m a curious person anyway. Being a RN also makes me a bit hyper curious.
I will share my results when I have them. In the meantime I can only try to live as I am.
I have two friends currently going through cancer. One with MM & the other with Leukemia. They are my heroes and I pray for them frequently. Tough ladies is what I see in them.
I do not discount what we with MGUS have just hope and pray we get answers and understanding. To tackle a problem we must first know what we are dealing with.

@jdm02

For sure! Knowledge is empowering.

@suppiskey2surv @sally4910
Let’s see if I can post some information in the comments that might be helpful to both of you.
MGUS it’s not cancer and hopefully it will never be cancer for any of us. It’s considered a precursor condition for multiple myeloma, but the rate of progression from MGUS to multiple myeloma is very low/slow.
There’s no easy answer to how much risk you experience as an MGUS patient because there are so many variables. Pre-existing conditions make us more vulnerable than if we are otherwise 100% healthy.
I’m one of those people who wants to take the bull by the horns and immediately begin to whack away at whatever it is that’s threatening me. I’d prefer that I didn’t have the M protein at all. Treatment is reserved, however, for those people who are the most threatened by multiple myeloma. Even those who have smoldering multiple myeloma. As I understand it, it’s the same reason they don’t want you to get antibiotics for conditions that aren’t very serious because you’ll build up a tolerance for the antibiotics.
So although it may make you anxious not to be getting treatment, it actually means that your hematologist/oncologist considers you to be at low risk.
I honestly don’t know, nor do I remember reading anything in the literature about hives in particular as a symptom of MGUS. Some people do experience peripheral neuropathy. There are some medications that may help with that. Some of our members have had some success with curcumin/turmeric and others with diet, specifically the Mediterranean diet. You might search some of these discussions in Connect and see if you find them helpful.
You are absolutely correct about getting physicians to pay attention to you. You need to make sure that you are heard and that you have physicians who are willing to hear you. Finding the right physician is a really important part of your medical journey. I also find that I have to take some responsibility in making sure that this happens. I write down all my questions before my appointments and I pull out my notebook and systematically cross them off after we have discussed them to my satisfaction. That tells my physician that I’m really serious about him hearing me, but also reminds me that his time is valuable and I have to be organized in order to have a productive appointment.
There are many members of Connect who have lived decades with MGUS that has not advanced to Multiple Myeloma. My own “numbers” advanced a bit when I had major surgery, but then settled back down as my body healed. They are now back to where they were when I was first diagnosed, over 4 years ago.
Thank you both for your posts. We all learn from one another. Let me know how it’s going for you, particularly if your dots get connected as bout MGUS and hives.
Patty

@pmm

THANK YOU, Patty! Such great info. Your story rings so true in so many ways to mine. You are soooo on top of things. I try to be too but the docs around here only seem interested in addressing what's happening right in front of them instead of trying to put the pieces of the puzzle together. Haaaa. That's sort of funny. I LOVE puzzles . . . the harder the better BUT this MGUS puzzle drives me nuts, as I'm sure it does for the doctors as well. BUT, I think it should be THEIR job to put that one together.

I'm not worried about cancer (MM, in particular) at all anymore. AND I really don't ever expect or want any sort of "treatment" for it either. My numbers (THANK GOD) are so very low and of little concern to me other than to try and find some sort of respect by a doctor who could tell me that, yes, the things I've experienced in the past that have been noted on imaging and in bloodwork . . . are tied together by this stupid MGUS thing. I think much, much more research needs to be done on the condition and then correlated to the wide range of physical symptoms it can (at least I believe) cause.

The problem (at least for me) in using any sort of pain medication is that because the pain I've experienced and continue to experience from time to time is that it usually only lasts for moments and then disappears as quickly as it happens. Trying to "prevent" that sporadic and unpredictable, short-lived, kind of pain has only proven impossible.

Bottom line, at least for me personally, is I just hope to find a specialist who recognizes this condition as one that deserves the attention I believe it warrants. I hope to find someone who has the expertise with it to, at a minimum, explain it as a condition that can cause certain things to happen now and again and explain in a way that ties all these odd sensations together so that when "mom" just can't walk very far or feels like she just needs a little time to "rest", it's because she has MGUS and these things will just keep happening now and then so that people can then understand them as part of the condition. People are far more understanding and supportive if they have a label for a problem and that it's very real, not something "mom" is just cooking up for attention.

Oh yeah . . . I've tried that "journaling" thing with the doctors I've seen and all I seem to ever get after taking all that thought and time in "journaling" is the proverbial eyeball roll and glazed look of labeling me as being a hypochondriac in need of some sort of head shrinking. It's sooo beyond frustrating.

Anyhow . . . the search (at least for me) continues . . . in trying to find someone who will take the time to really listen to me when I'm asked to tell them all the symptoms I've had in the past and the ones that existed long before I turned 67 that just continue to come and go, as well as the new ones that deserve their place on that list of "normal" abnormal. Some folks find that a funny, unbelievable description but my husband and I have both experienced those exact words come out of the mouths of more than one doctor.

Thank you, once again, for sharing your story. It, definitely, helped!
Dawn

I do not know if this is helpful but may be important to know. Others have provided the not so recent article or articles authored by some Mayo experts that describe the conditions associated with MGUS and those which are not. Conditions, of course, have symptoms.
I have had MGUS for at least 23 years - Mayo diagnosed it in 2002 based on a total protein value that was ONE decimal point low 6.6 versus 6.7. The tech saw that and went further. If I did not go to Mayo, this may never have been found.
Anyway, i have recently read articles, one authored by Dr Rajukar that an HDL in a MGUS patient could be suppressed. Similarly insulin values can be suppressed also.
I am pleased that our disease is finally getting attention. As another patient wrote: Knowledge is power!

@hsminc

Thank you for sharing your experiences on this strange and convoluted journey called MGUS!!!