MGUS with bone pain?

Well, Betty…snicker snort! 😂 Your doctor not having your name correct doesn’t do much to inspire confidence. Oy vey is right!
But your news was great! No MM! I’m doing a happy dance for you! I know the glee is being overshadowed by the Twilight Zone-esque appointment you had and maybe the feeling that the doctor missed something. There are other reasons besides MM and MGUS for light chains to be outside of the normal ranges. But it was important to rule out MM. Besides plasma disorders, conditions like chronic inflammation or an immune system disorder can also cause high levels of free light chains in your blood. You have a number of other health issues that might be causing this. So for now, if this were me, I’d put the MM discussion on the back burner and take try the iron supplements and hope for no constipation. ☺️ By the way, that does seem to be a standard question…

I was happy to see you posted in the Art for Healing support group! ☺️ There are so many of us who rely on our creative side to bring much needed distraction and peace to our body and soul. Wishing you a delightful day. Hopefully you’re feeling much lighter after the non-diagnosis.
Peace ☮️

in reply to @loribmt Thank you for your ongoing support. My appointment today went well, I do not have MM. However, I must tell you how the appointment started. I am sitting in the exam room, doctor walks in and says, "Hello Betty and how are you since our last visit?" I say, "I am not Betty." He says, "Why are you here?" I say, " I am here because my PCP is unable to interpret my lab results." The doctor says, "What lab results?" I say, "All of them, especially the IGG test and the light chains." He says, "You are so thin, why?" I try to explain why, that I have dilation of my bile ducts, but I have no definitive answer as to why because the hepatologist does not know why. He further says that my red blood cell count is very low, which I am well aware of. He says, "How long has your red blood cell count been low?" "For many months, I say." "You should be on iron supplements." "My PCP told me not to take iron." I am shaking my head as I type this because this is why I do not want to go to any other doctors.
In any event, the labs are all skewed because of the weight loss, and I will now begin iron supplements. He is also ordering many more labs to check to see if I have iron overload because that too showed up on a lab test, and both my father and nephew had/have this problem.
I felt like I was in the twilight zone. At least he did not ask if I was constipated, because that has been a common question every single doctor asks me when I first see them. What is that about?
I am happy he does not see any cancer. This is very good news. However, after I got home I began thinking about those IGG results and what, if any treatment is needed.
I received the results from the labs drawn today, and it appears that my LDH lab result is especially high. I understand this could be for a number of reasons, those of which I will learn more about during a phone call visit in two weeks.
I think now I just want to crawl into a cave and begin chalk drawings on the walls.
I will present the water color painting once I have completed the same. Truth be told, I am still a wreck. However, I will get through all of this one way or another, even if it means painting more signs, but I will not direct any more to my neighbor. I have a strong feeling she will move. Now I am redoing my health care advance directive for the third time in a year. Oy vey

Thank you Lori. This is such helpful information. I was diagnosed in February of this year with MGUS. I tested positive a few times last year for light chain kappa. I will be speaking with my GP again about possibly getting a second opinion. My GP is the one who will follow up. The oncologist showed no interest in taking this on. My partner always says that if there's a crappy specialist for miles around, they always find me, and I'm unfortunately starting to believe that this might be the case. No bone marrow biopsy but imaging showed "patchy bones" in multiple areas, including ribs, spine, right hip and tibias. The bone pain in my tibias, fingers and toes is what cripples me the most. The pain in the ribs and spine only hinders my breathing and it uncomfortable, but no bone cramping like the extremities.

I was recently diagnosed with mgus, and ptch1 gene mutation and mthfr gene mutation and I have so many questions and concerns as I am typing this my fingers are in terrible pain,and my feet and lower back are the same way. Also I have been experiencing pain and this weird popping in my right rib cage. I've been to 2 different oncology/hematologists who seem to think these diagnosis are not a big deal but this pain is new and is all I can think about. Also experiencing numbness and tingling in my fingers on my right hand and severe brain fog. Any advice would be greatly appreciated. P.S. I'm brand new here and grateful to have found you all!

Welcome to Connect @tellis383. I’m happy you found us too! It helps to find that you’re not alone with your new diagnosis. There are a quite a few members in Connect who have MGUS and also experiencing the similar pains that you’re describing. It’s awful when your doctors don’t seem to be taking this seriously.

MGUS-Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood. Usually patients diagnosed can go years without any issues but this can progress to more serious health issues.

A little reading for you.
From Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
~~~
Healthline.com:
https://www.healthline.com/health/how-serious-is-mgus#faq
~~~
Initially, from my understanding, most patients aren’t even aware there’s an issue. But because it can progress over time, some of the changes that doctors should be on the lookout for are bone pain, fatigue or weakness, unintentional weight loss, fever or night sweats,headache, dizziness, nerve pain, or changes in vision or hearing, etc.

It sounds like these pains, brain fog and unusual symptoms are pretty recent changes for you. There are three types of MGUS, each associated with an elevated risk of certain health conditions. Knowing the particular type of MGUS can classify a patient as low, medium or higher risk for developing conditions such as multiple myeloma.

Have you mentioned this new pains and brain fog to your hematologist oncologist? Were you given a type classification for your MGUS?

Thank you for replying back so quickly...no I wasn't given a type classification for my MGUS, and I have informed him of my symptoms but I'm not really content with him. I am thinking that I will find a new doctor.

I was recently diagnosed with mgus, and ptch1 gene mutation and mthfr gene mutation and I have so many questions and concerns as I am typing this my fingers are in terrible pain,and my feet and lower back are the same way. Also I have been experiencing pain and this weird popping in my right rib cage. I've been to 2 different oncology/hematologists who seem to think these diagnosis are not a big deal but this pain is new and is all I can think about. Also experiencing numbness and tingling in my fingers on my right hand and severe brain fog. Any advice would be greatly appreciated. P.S. I'm brand new here and grateful to have found you all!

I think you’re wise in looking for another hematologist oncologist. This current doctor doesn’t seem to be taking your health seriously, especially since you’ve told him about your changing symptoms.
Do you live near a larger teaching facility such as a university hospital?

yes I actually do live close to Indiana University school of medicine....I will look into a doctor from there...thank you for your advice,