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← Return to MGUS with bone pain?
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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.
Replies to "Thank you Lori. This is such helpful information. I was diagnosed in February of this year..."
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!
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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? ☺️