I was diagnosed IgG kappa MGUS/smoldering 5 months ago with IgG protein 2800. BMB showed 9%. Multiple myeloma specialist suspected autoimmune disorder but my ANA panels did not show autoimmune.
2 months ago a spinal MRI revealed 2 spinal "masses" . Neurosurgery performed resection/biopsy. Biopsy revealed no malignancy.
My case was presented to the tumor board and I was informed today it is believed that I have paraneoplastic syndrome. I see my multiple myeloma specialist in 4 weeks.
Paraneoplastic syndrome treatment is to treat the cancer and immunosuppression.
Does anyone have any experience with this or advice?
I know typically MGUS or SMM does not mean treatment, but would this mean treatment might be necessary?
FYI: I am a 38 year old female with a 15 year history of low platelets and low WBC levels, otherwise healthy. Current symptoms = fatigue, nausea, neuropathy pain, arthritic pain, depression type of mood swings(new).
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Re: Paraneoplastic syndrome
There can be reasons to treat a MGUS or smoldering myeloma. These are generally due to severe neuropathy or arthropathy. I am not sure what to make of the masses. If they are not plasmacytomas, I am not sure what to make of the "paraneoplastic" diagnosis.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Paraneoplastic syndrome
Thank you Dr. for your reply. My Bone Marrow Biopsy was done and showed 9% so I was sent to City of Hope to essentially confirm that my MGUS levels needed to just be monitored. During my visit at COH my physician noticed a very tender spot on my spine. She ordered MRI to see what was going on there. It revealed 2 masses. A small mass near T7 involving what appeared to be lymph nodes and very close to the aorta. The larger mass involved T6 and T7. It was thought they were looking at possible plasmacytomas as my labs revealed IgG Kappa 3200. They resected the mass involving T6, T7 and even cleaned up T5. The post surgical MRI showed 90% of the mass was removed. Biopsy did not show anything abnormal. They presented my case to the tumor board and it was speculated that they may be looking at spinal degeneration and possible paraneoplastic syndrome. My neurosurgeon is baffled at the masses and so is my Multiple Myeloma specialist I am seeing. I have a follow up full spinal MRI the first week of December. I also have full labs.
I am a very active healthy 38 year old. I have a family history of melanoma, bladder cancer, prostate cancer (mets to brain), prostate cancer. In the past 6 months my syptoms are fatigue, nausea, neuropathy in fingers and toes, edema in both legs, forgetfulness, arthritic type of pain, and just "off".
I am currently taking B complex, curcumin, and vitamin D.
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Worried about these "masses". What are they? How can something that is "nothing" cause pain show up on MRI's?
Sick of feeling sick. I just want to fix whatever this is.
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If it is just MGUS/Smoldering, then why do I feel sick. MGUS is not supposed to have symptoms.
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I am a very active healthy 38 year old. I have a family history of melanoma, bladder cancer, prostate cancer (mets to brain), prostate cancer. In the past 6 months my syptoms are fatigue, nausea, neuropathy in fingers and toes, edema in both legs, forgetfulness, arthritic type of pain, and just "off".
I am currently taking B complex, curcumin, and vitamin D.
-------------------------
Worried about these "masses". What are they? How can something that is "nothing" cause pain show up on MRI's?
Sick of feeling sick. I just want to fix whatever this is.
--------------------------
If it is just MGUS/Smoldering, then why do I feel sick. MGUS is not supposed to have symptoms.
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