MGUS and spinal lesions

Posted by emm0284 @emm0284, Oct 16 1:03pm

I was diagnosed with MGUS a few years ago and my oncologist monitors my bloodwork regularly. Earlier this year I developed a compression fracture in my lumbar spine with a suspected pathological cause. This was very strange because I was a very active, otherwise healthy 60-year-old woman. While in the hospital in July having posterior fusion surgery, the MRI and CT scans showed a lytic lesion in my lumbar spine and small lytic lesions in my thoracic spine. All of the doctors suspected multiple myeloma. But a bone marrow biopsy, two PET scans, two rounds of full bloodwork, and urine analysis are not showing multiple myeloma. My many doctors don't know what to make of it. Has anyone developed spinal lesions that had a cause other than multiple myeloma? Has anyone had multiple myeloma that didn't show up on any of these tests?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Suppiskey2surv | @suppiskey2surv | Oct 16 9:05pm

I have cysts and lesions all the way up and down my spine. Have had MGUS for years but was told MM is not the cause. Osteoarthritis there, for sure. Lots of rib and back pain, especially at night. "Stable" blood results. Mom died of MM but was told condition is, likely, NOT hereditary. After 2 bone marrow biopsies which didn't show high volume of plasma cells, and everything blamed on OA, I'm "just" trying to live with the annoying pain and yearly MGUS monitoring. Not easy, for sure, but not sure I can do much else. Tried to get into MAYO, as my husband has excellent care from his nephrologist in Rochester when we need her help but I was turned down, sadly. The opinion from NIH years ago that they gave me as well as the scans they ran, AND their bisphosphonate suggestions have helped me get from year to year, waiting for MGUS results. Not easy but support from everyone on forums like these helps too. We need each other, offering words of love and encouragement, not to mention shared knowledge, experience and information.

❤️

emm0284 | @emm0284 | Oct 17 8:47am

In reply to @suppiskey2surv "I have cysts and lesions all the way up and down my spine. Have had MGUS..." + (show)

@suppiskey2surv
Thank you so much for the reply. Your support really helps. I'm sorry to hear you are struggling with something similar.

Suppiskey2surv | @suppiskey2surv | Oct 17 9:25am

In reply to @emm0284 "@suppiskey2surv Thank you so much for the reply. Your support really helps. I'm sorry to hear..." + (show)

@emm0284

Thank you, hun. Yeah, it's a big challenge some days. Without Dr. Landgren's recommendations at the NIH, years ago though, I wouldn't be as able to cope. I'm not sure he's still practicing at Sloan Kettering anymore after he left the NIH, but his opinions have given me a great deal of reassurance that my MGUS will just be more annoying than anything else.

Write anytime you like!

Dawn

Please sign in or register to post a reply.