Does anyone else have MGUS?

@canadabob , that's a good ratio. Mine has fluctuated to a bit over 2.00...then dropped back down on my last test about 8 mos ago. Usually that's a good sign M spike is down too. I'm anxious to go this Thursday, just curious.

@diana59 , I would insist on some testing. Mayo NEVER prescribes anything without further testing.
It's just so strange...seems most primary drs prescribe a bandaid, no tests. Mine does the same thing, so I rarely bother to complain to him...I wait till I go to Mayo. That said, there were times I felt like toooooo many tests were being done, so I now speak up about that, necessity only. I went through ALOT!! Hope you get to the root, and then only treat accordingly.

@diana59 Welcome to Mayo Clinic Connect.

Are you being followed by a hematologist oncologist? In my experience, a family practice provider simply does not have the knowledge to work with MGUS patients. I would at least check with your specialist to get their opinion, so you can consider what your decision will be.

Will you let us know what you find out, please?
Ginger

I was diagnosed withMGUS in 2022. I saw a hemologist who resured me to follow it. If i get bone pain to be seen. I went to my Family Practice doc. who diagnosed my hip pain as bursitis. Three weeks later I still have hip pain, have developed knee pain. Maybe because Im not walking right? I now have so much pain in my foot it hurts to walk. I dont want to be paranoid baut I really feel something is not right. My FP wants to give my me a steroid injection in my hip. I would like to have an MRI. Is that unreasonable? What should I try first? Kinda scared.

I was diagnosed withMGUS in 2022. I saw a hemologist who resured me to follow it. If i get bone pain to be seen. I went to my Family Practice doc. who diagnosed my hip pain as bursitis. Three weeks later I still have hip pain, have developed knee pain. Maybe because Im not walking right? I now have so much pain in my foot it hurts to walk. I dont want to be paranoid baut I really feel something is not right. My FP wants to give my me a steroid injection in my hip. I would like to have an MRI. Is that unreasonable? What should I try first? Kinda scared.

Thanks for wishes. Mine is IgG Kappa as well.

My ratio of Kappa/ Lambada is 1.65 at the very top of the range.

@canadabob , GREAT!!! My primary has said he can handle me too....yet he never found the mgus.
Mayo does an extensive bloodwork which they call a bundle test. I'm so grateful to be a patient there/have them as my drs...they are like guardian angels to me. Hope you get seen soon, my best to you!!

The MGUS was discovered by a neurologist 4 years ago who has been monitoring it every 6 months. I asked him for a referral to a hematologist and his answer was that “all they would do is take bone marrow biopsy”. I have no idea why he has this attitude. He’s not the expert on MGUS. Not by a long shot.

I have since convinced my family doctor to refer me and now I’m just waiting for the call.

@canadabob , sorry to hear this...I dont understand why your not under the care of a hematologist??
The swelling could be connected to different types of conditions...there are also different types of mgus. I have IGG KAPPA.