MGUS with bone pain?

Hi @nathangolden. I'm sorry to hear about your bone pain. While I don't have bone pain I do have other symptoms (tingling in toes, blacking out after bending over, and itching) I link to my diagnosis of IgG Lambda MGUS with an abnormal low light chain ratio. Although my monoclonal protein was only 0.5, I was concerned enough about the low and trending light chain ratio to request a bone marrow biopsy. Fortunately, my hematologist ordered it despite my not meeting the normal criteria. It revealed 10% monoclonal protein in my marrow -- low risk SMM. I am glad I know so I can be even more vigilant. My hematologist also doesn't believe my symptoms are related to MGUS or SMM. But I have an appointment at Mayo later this month to learn more about my condition.

Your bone pain may or may not be unrelated to MGUS or you may be misdiagnosed, but keep pressing until you get answers. I know I'm echoing a lot of others in this support group, but you truly do need to advocate for yourself with your doctors. Best of luck to you.

Welcome to Connect, @nathangolden. I’m going to echo @deborahjb by encouraging you to advocate for yourself. This may mean getting a second opinion because no one should be dealing with this level of bone pain without a definable cause.

Your hematologist is pretty dismissive with the diagnosis of ‘only’ MGUS. While it’s not aggressive it is a condition that requires monitoring to keep tabs on any potential changes. It’s generally a very slowly developing blood condition and in some people it doesn’t change. But it can progress to smoldering multiple myeloma or multiple myeloma, which can have side effects of bone pain. So it warrants finding out exactly what’s going on in your bone marrow. Are you on a watchful waiting schedule with your hematologist? Is this the doctor who is proscribing the morphine for you?

Here are a couple links with information on MGUS. It’s not meant to alarm you but knowledge is power.
https://www.healthline.com/health/how-serious-is-mgus
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https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

While some of the informational articles suggest that most people don’t experience symptoms with MGUS, you can see in our forum that many of our members have varying symptoms with their condition.

I found some relevant discussions in the forum:
Anyone with MGUS, do you have joint pain? (Posted by @cass52)
https://connect.mayoclinic.org/discussion/mgus-3/

https://connect.mayoclinic.org/comment/825884/ (with
@lynne756 describing how she feels her joint and bone pain might be related to her MGUS diagnosis)
Here’s a link to that entire discussion group conversation
~Does anyone else have MGUS?
https://connect.mayoclinic.org/discussion/mgus-diagnosis/

How long ago was your diagnosis for MGUS? Did you have a bone marrow biopsy or any imagining done?

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.

Aw, Nathan, that sounds just awful. I’m so sorry you’re having this much pain on a daily basis. You definitely need to have this explored further to find answers and to get you off that morphine.

‘Patchy bone’s? What the heck does that mean anyway? Were there areas that looked like ‘holes’ in your bones? Edema? Dense areas? Having anything untoward showing up on imagining warrants a followup! I’d be on that with the tenacity of a honey badger! Don’t give up!

I’m not implying that you have multiple myeloma but the rib and spine pain you’re experiencing sounds very much like symptoms many people with Multiple Myeloma endure.

You’ll get tired of me tossing out information for you but again, it’s a way to help you advocate for yourself when you contact your doctor. Here’s some information on Multiple Myeloma. Again, not saying this is what you have but the symptoms are very parallel after your diagnosis with MGUS.
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https://www.healthline.com/health/cancer/multiple-myeloma-bone-lesions-damage-pain

Please don’t let another day go by without making an appt with your GP to get a new referral. You need to feel that you have hope in your life so that you can start healing and feeling better again. What do you think? ☺️

Hello Nathan, I’m glad you found our group. I had the same reaction as Lori when I read “just MGUS.“.
Finding the right specialist is essential. Your oncologist/hematologist should be someone experienced in the treatment of multiple myeloma. Hopefully you will never have multiple myeloma, but that’s the guy or gal who will ensure that if your numbers change drastically you are treated properly. My numbers have been relatively stable, although they are increasing as time goes by. I’m seen every three months and have blood work done and they do imaging once a year. You need a specialist to listen to you, answer all your questions, and stay current on the rapidly changing information about our a little corner of blood disorder land.
Again welcome. Get thee to a good specialist!

Patty

@nathangolden Welcome to Mayo Clinic Connect. You have had some great information passe on to you already, and I echo all those comments! Advocate for yourself, even when it is unpopular. Your health is the most important thing, and if your oncologist doesn't seem to care now, he/she won't in the future, either.

I am concerned that you should have a scan to make sure you don't have lesions in your bones. Please make that call today, and let us know!
Ginger

I only wish I had second opinion the va won't pay for second opinions so I'm stuck with the same doctors with the same opinions that MGUS is not causing all my systems but they have no idea what is it's like being stuck on a one way highway

in reply to @lorib Thank you for all of this information. I see a hematologist on Wednesday this week to discuss my lab tests which show vast irregularities in reference to the light chains. I have a terrible sense of foreboding because my PCP has already mentioned to me that he and the hematologist suspected that I have multiple myeloma, but my PCP said he really did not understand the entirety of the lab results, thus the referral. I am trying my best to remain positive, but admit that I am a bit frightened by the mere fact that my PCP mentioned the multiple myeloma to me, and I am already suffering from a multitude of other health conditions. However, I still tell myself everyday how grateful I am to be above the ground, because today, many are not. Thank you

Hi Frances, any day we’re not pushing daisies up from the under side is a gift. But I also know the sense of foreboding that can hover in the background while we try to remain all cheery and positive. That takes Herculean strength some days, doesn’t it?

We have quite a few members with MM so if it does turn out that this is what you’re dealing with you’ll have a legion of friends who can help with more information, encouragement and hope to share with you.
My advice right now is to not visit with Dr Google because sometimes looking online can send you to areas that aren’t even applicable to you and they cause more stress. So let’s wait and see what your hematologist has to say. I hope it’s a favorable meeting for you and that you ‘click’ with your new doctor.
Before you head out the door, make a little list of questions you might want to ask.
I found a Connect discussion that might be helpful for you. It’s called: Your tips on How to Get Off to a Good Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Good luck and let me know what you find out, ok? ☺️

in reply to @loribmt Thank you. I have stayed off of Google for obvious reasons. However, in texting with my former rheumatologist the other day, she mentioned to me that she had thought of another autoimmune condition associated with the worsening of my Raynauds Syndrome, but did not want to discuss this via text. albeit she was very concerned. She has never said this to me before, and she also knows I will be seeing the hematologist this week. While my curiosity was heightened, I forced myself not to go searching, even though I usually just look at the NIH or Cleveland Clinic site. In all fairness, I am a trainwreck. However, I am meeting a long time friend today who I have not seen in 10 years, and the loaf of bread I baked for her this morning came out perfect, as did the card I made. Interestingly enough, this rustic round I made came out in the shape of a heart.