I posted over on the undiagnosed symptoms forum also, and thought perhaps this forum may be of help also. For nearly a year I've been experiencing symptoms that cycle - the cycle started with about one week of symptoms followed by one week symptom-free, and now cycles faster. It starts with itchy skin (no redness) from the ankles to knees, and on the abdomen and chest. Then a rash starts from the abdomen to the neck along with general achiness. The recurring low-grade fevers start in the late afternoon and last until around 3am with chills and sweating throughout the day. Vision becomes blurry at times with a sensation like there is sleep in my eyes - everything checked out fine with the opthalmologist except that the fluid in my eyes is slightly stringy. Other symptoms include slight weight gain, extreme fatigue, and red spots under the skin all over that look like someone poked me with needles everywhere. All tests (bloodwork and ct scans) come back normal except for the presence of monoclonal protein. Even tests for inflammation come back normal despite there being observable redness and swelling due to the rashes. I have seen an infectious disease specialist and hematologist/oncologist who are both stumped. A dermatologist recently diagnosed the rash as pityrosporum folliculitis, and the rash is responding to treatment - however, continues to cycle.
The hematologist/oncologist feels that whatever this is, it is rare which makes testing the equivalent of looking for a needle in a haystack since a wide variety of tests over the last six months have come up normal despite the protein. Any ideas of what this could be and what direction to go with testing? Thank you
How are you? I'm sorry to hear what you have been through for the last year. The two most common causes of monoclonal protein in serum or urine are multiple myeloma or monoclonal gammopathy of undetermined significance (MGUS). The diagnostic triad for multiple myeloma includes significant paraprotein in the serum or urine, more than 10% to 15% plasma cells in bone marrow, and the presence of bony lesions. MGUS, on the other hand, is characterized by a serum IgG monoclonal protein with no or only a small amount of protein in urine (Bence Jones protein < 1 g/24 hr). At this point, it is important that regular follow-up with your doctor is done for proper monitoring. Take care and do keep us posted.
Thank you for the response and information. The monoclonal protein is a small amount and has stayed consistent throughout all this time, so they aren't too concerned at this point about myeloma, but they are concerned that the fevers, fatigue, rash, red spots, blurry vision, etc. continue - they had hoped that those symptoms could be explained by the body fighting off some type of unidentified virus or auto-immune response that would eventually calm down. Since all tests continue to come back normal with exception to the monoclonal protein and the symptoms continue to escalate, the doctors want me to go to Mayo Clinic to see if they can figure out if the symptoms are due to a developing myeloma or lymphoma, or some other rare auto-immune or blood disorder.
If all the tests come back normal and symptoms continue to escalate, I agree with you doctors in referring you to the Mayo Clinic for further evaluation. How about your family history? This would help in determining the presence of autoimmune and blood disorders. Wishing you all the best on these further testing. Take care and do keep us posted.
Since the last time I posted, I was referred to a rheumatologist who feels confident that this is not an autoimmune issue - that leaves us with multiple myeloma or a blood disorder. So, I am scheduled to have a bone marrow biopsy next week. The symptoms are escalating with vision becoming a major problem to the point where I don't drive now. If the biopsy doesn't show anything, then they will send me to Mayo Clinic. I really want this to be diagnosed at the clinic in my area rather than having to travel for a diagnosis and treatment. Do you have any ideas in regard to what should be tested for in the next round of tests other than the usual things they check for in a bone marrow biopsy?
google 1st day at mayo. that is me. read it before you go to mayo but if you can cut the red tape it is a great place to gp. Make sure that they have your appointments all set up including the neurologist and hemotologist that specializes in MGus. See the facebook chats on mgus bonnie canby
I have been diagnosed with RA as well as a Protein S disorder. For the past several months I have had red rash and lumps that itch, they tend to be on areas over either my ribs, spine hips, etc. I also have vision issues, swollen joints, bruise easily. After almost all tests were done, Compliment deficiency was ruled out. Last Set of Gamma Dist. tests require immunotyping to rule out monoclonal protein. My doctor stated he was checking for multiple myeloma. Does this make sense?? I am very worried now.
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