Does anyone else have MGUS?

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.

@tatajess , I have had bone density tests...I have osteoporosis. I posted here on there this thread a yesterday. You'll see answers to your questions.

Oh. Yes. Ok. I read your comment. How long have you had mgus. That you know of

This is so scary. How are u getting around. With the osteopeeosis

@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.

@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.

Thank you for sharing with me. I talk to God a lot. Scared. I have to be positive. Stop driving myself crazy.

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 , 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!!

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.