@suppiskey2surv
I get those pains as well. Random and short-lived, fortunately. They will definitely take my breath away. My hem/onc doc is diligent with regular scans but has never connected those dots. It would be nice to get a reasoned explanation.
I get these pains in my feet. Do you get them other places?

A hematologist/oncologist is the person to see.The community doctors have a fairly decent population of MGUS cases and they are mostly well so they do not pay attention to subtle changes. I suggest at least an annual consultation with a Hem/Onc. They know the disease and tend to it properly. If you have a teaching or academic medical center near you I strongly suggest you call the Center and make an appointment with a hematologist/oncologist. Entirely different attitude and approach to MGUS. They take it more seriously but do not go overboard with treatment etc. THey understand the symptoms and how they relate to MGUS. THey will get a baseline on you and recommend timely treatment or watchful waiting, for you. IF early in process or low risk they will evaluate annually. If things change then it gets more frequent.

I recently feel like I have developed a slight case of Neuropathy. Is that part of MGUS does anyone know.?

Thank you. It is. I doubt any of these things are serious, in and of themselves, which is why I fear my local healthcare providers aren't interested in addressing the MGUS as a cause for any of it or in identifying a disorder related to it that could give me the diagnosis (if there even is one to be found) that would be something I could offer as an explanation as to how I feel a lot of the time. Until a person is given a concrete reason for the things that keep them from doing certain things, most people (including doctors, family and friends) think that person is just either making it up for attention or that it's some sort of mental / behaviorial problem. Normally, I would agree with that but when you have things showing up in bloodwork, X-rays and scans, it should be considered very "real" and unimagined. I'm not sure what I'm going to try and do, here at the local level anymore. I tried to schedule something at MAYO but they denied seeing me. So, in the meanwhile I suppose, I shall just continue with the yearly M-spike monitoring and go from there.

Thank you for caring!

THANK YOU!!!!

Yes, I agree. A hematologist/oncologist is the person my husband and I decided this morning is the person who should be monitoring the MGUS, IgG Kappa paraprotein. You're right . . . too many doctors have been involved to date. My primary doctor, unfortunately, was the one I was relying too much on to monitor things. She was the one who just kept referring me to different places, treating each thing as a separate issue when (at least I believe) there is a better explanation for most of it. I saw a hem/onc a couple of years ago but since my M-spikes had always been so low, all along . . . I just didn't want to clog up his waiting room when there were so many more serious (cancer) patients there; but, I think it's time to let go of that feeling. He probably would have continued to see me but I just thought it best to have my primary run the test every year when I saw her. Before in the past especially when all this started I was (and I think they were since my mother died of MM when she was my age) . . . we were more alarmed; but, now, it just seems like an annoying thing hanging over our heads that has to be "monitored". I, now, actually though think it's time to mention how fatigued I've been at times and feeling dizzy and weak from time to time. THAT is fairly "new". Putting that symptom on my past and present list of symptoms makes me think (more and more) that there really is an MGUS diagnosis out there that could explain a great many things (both from what's happened in the past and today).

If the person I see for a "re-check" isn't able to address the issue here at the local level, I am going to try and get into MAYO. My husband has a kidney specialist there whom we started to see for his "rare" kidney disease since the docs here only seemed interested in treating the multitude of odd symptoms he had and screwed up more than once, misdiagnosing him time and time again. My problem, I realize, is by no means as urgent or as life-threatening as his or anyone else suffering from serious health conditions . . . yet, when a person can't even rake leaves for more than 3 minutes outside in this beautiful weather or all but collapse because of lightening bolt pain that comes on out of nowhere . . . . there HAS to be a reason that deserves further explanation other than "Oh, geeezzz. There goes "Mom" again with all her aches and pains. Would just be nice to have the respect and attention given to the situation by someone in the medical profession who could give this a "name". MGUS, I think, is the cause for much of this . . . and it's past time for someone in the medical profession to either say it is or it isn't who is familiar with the things it can cause.

I've been able, for years, to let go of a lot of this but, the fatigue and the weakness, is pretty recent; although, some of the same things that were a problem in the past, still come and go too. Who knows. May be just another "dead end" in trying to find anything out but I think I'm done going to this doctor and that sort of specialist who says everything is just fine. There has been much research and information discovered about MGUS and what it could mean since all this started when I was younger; so, hopefully, I can find a doctor / specialist who will take the time to consider the whole picture instead of just sending me on another wild goose chase.

Thanks for sharing your story. It really helped!

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.