Does anyone else have MGUS?

@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.

@tatajess , I've been diagnosed with mgus over 5 yrs ago, I'd have to check my portal to be exact. I think its more than 5 yrs. I'm a patient at Mayo clinic, and it was found while checking for something else. #'s fluctuate, and last 2 trs it's been very slight, they haven't even quantitate because it dropped to a trace. It can spike too, so thats why we watch it. I have no symptoms associated with it, like anemia, kidney, calcium, etc.
Drs haven't said whether fatigue and aches are connected either.
I started to going to Mayo 10 yrs ago for widespread severe rashes...I still get, but not severe. No answers if any connection.
Osteoporosis, I feel fine...I do everything, and I'm considered high risk fracture. I honestly have no idea what's causing my aches and burning achey feet...ill ask Thursday. I had a super great dr there, left no stone unturned, but he's not practicing right now. I'm seeing another Dr who also seems thorough, and caring, so im praying about my follow-up.
I know you said your scared...but let's take it one day at a time. You could remain stable for years, so why not let tomorrow worry about itself...enjoy today. Treatment these days, seems very positive too.

I also have leg and joint pain. The knees and hips. It’s not a bone on bone issue it’s seems more of a swelling issue.

I was diagnosed with MGUS 4 years ago and am still waiting to see a hematologist.