I have MGUS IgM. It was diagnosed in 2003-incidental finding. All other blood tests normal then and now. Level was 1570mg. It is now 2310 mg- I had it re-checked because I started getting sharp needle stick-like pains (they last about a second) in my hands forearms, wrists, ankles and feet--all infrequent but bothersome. Sometimes I feel burning in the bottom of my feet/face. I have no motor loss at all, and no numbness. Had Anti-mag test and bone marrow biopsy--not back yet from the lab.
Assuming the IgM MGUS is diagnosed as the cause of my neuropathy and there is no other underlying disease, besides plasma exchange and prednisone (which according to my research does not work well or at all with IgM), what are the cutting edge treatments? Are there drugs/therapies available that treat the cause as opposed to symptoms? Who can I see that has the experience in this condition?
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
MGUS causes neuropahty in 10-30% of cases, with IgM MGUS being more frequently associated with neuropathy. It is important to assess for antigen target with IgM MGUS such as Anti-MAG, ANTI-GM2 and Anti-GALOP (are all associated with neuropathies). It is true that IgM MGUS does not seem to respond to plasma exchange as well as IgG or IgA. Some centers are promoting cyclophosamide + plasma excahnge (but side effects/ possible complications are greater). Treatment for the neuropathy is generally symptomatic with neuropathic pain medications Elavil, neurontin, lyrica, tegretol, cymbalta etc. when confined to sensory symptoms only.
You rising level of M-Protein is concerning. An M-protein of 3000mg or greater would indicate a possible malignant transformation. Your bone marrow biopsy will answer this concern, and should show less than 5% plasma cells if still consistent with MGUS. I would also recommend a skeltal survey, bone scan and CT of the C-spine to evaluate for additional pathology that may explain your symptoms.
I would recommend that you see a neuromusclular specialist (neurologist that specializes in neuropathies and related disorders of peripheral nerves and muscles).
I hope this has been helpful.
MGUS is a consdition where there is an abnormally high level of a certain protein antibody in the plasma. Exactly what they are doing is usually unknow--hence the name. I would suggest looking it up on the inernet. Only in some cases does it cause symptoms. In all cases, to my kowledge, it means that the afflicted inddividual has a higher chance of developing certain diseases like Myeloma or lymphoma. it It can be tested for in a protein electrophorsesis of the plasma.
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