@jeannie215
hi Jeannie, welcome to the forum. Even though they tell you that MGUS is low risk for morphing into Multiple Myeloma, it is kind of jolt, isn’t it? A purview of the posts on the forum will quickly tell you that the symptoms, or lack thereof, of people diagnosed with MGUS, varies from person to person. And many of us have coexisting medical conditions and so it’s really hard to sort out which symptoms are attributable to the MGUS and which are not.
Bone pain is no joke as it is certainly debilitating. That’s worth a discussion with your hematologist/oncologist about some bone scans to ensure that you have no lesions of any kind. Unfortunately, even at 48, you could have some osteoarthritis, but it should be checked out.
Depending on what your blood analysis tells your hematologist about your condition, there will be several diagnostic tests ordered if they haven’t been already including whole body scans. If your physician has not already mentioned this to you, it’s worth a discussion about what he/she will do to ensure that your MGUS has not progressed. You want to make sure that you have a hematologist/oncologist who is very experienced in dealing with multiple myeloma. You don’t have multiple myeloma if you’ve been diagnosed with MGUS and I hope you never have multiple myeloma, but you want a competent physician who is proactive and engaged fully in your care. and you need someone who answers all your questions patiently, and explains his or her treatment strategy.
I probably sound like a broken record to the forum members, but I was a medical social worker for the last part of my social work career. It’s really important to write down your questions and ask them in your appointment, or if it’s going to be a while before your next appointment ask for a telephone appointment. Telemedicine is appealing to doctors. Doctors can be intimidating or they are so darn nice that you don’t want to waste their time, but your questions are important. If you have bone pain, it’s important for your physician to know about that and to make the appropriate referrals to orthopedics or make sure that you don’t have any lesions.
Dr. Google will take you down a rabbit hole and you’ll be worried about 1 million things that are not relevant to your diagnosis. It’s very comforting to know that other people have MGUS and to hear about their experience, but there is so much variation in the diagnosis and possible symptoms that it’s important for you to stay focused on what your physicians are telling you. Anecdotal information makes us feel not so alone, and there is certainly benefit to that, but try not to take other peoples burdens on as your own.
I’m so glad that you found this forum. I find it very helpful. Let us know how you are and what you find out from your doctor.
Wishing you the very best possible outcome.
Patty