Hello,
My name is Carrie and I am 49 year old African American female. I have been struggling with Proteinuria for about 6 1/2 years now and I was also diagnosed with MCTD. Recently my protein has increase tremendously, I've developed moderate Pulmonary Hypertension, Microvascular Angina and mild hypothyroidism. My doctor has been working tirelessly to find some answers for me. I had an ANA Screen and an ANCA Screen performed, the ANA was positive with a Nucleolar pattern and a Titer of 1:40. I also had a Protein Total, Protein Electromorphesis, Total, both serum and urine. Both tests indicate Abnormal
Protein Bands, serum shows Beta peak at 0.2 and Gamma Peak @ 0.1, urine shows Band 1 @ 16 and Band 2 @ 10.... The interpretation suggests a possible Monoclonal Protein and both sites in serum and suggests 2 Monoclonal Proteins in the random urine. My Albumin and Alphas are in normal range, @ 7.5 Albumin and Alpha 1 @ 0.2, Alpha 2 @ 0.7. My creatinine random urine is 378 mg/dl, Protein Creatinine Ratio is 1447 mg/g, total protein random is 547 mg/dl. LD is 214 u/l, Myoglobin, serum is 62 u/l and Creatine Kinase, Total is 314 u/l...My SED Rate, Cryoglobulin, Cyclic Citrullinated Peptide are normal. I will see my PCP tomorrow to go over these results, however I am very proactive about my health because doctors can sometime be so passive with their patients. During my research, it appears that I fit the profile for multiple myeloma and I do have Focal Segmental Glomerulosclerosis with a 24hr urine total protein of 2936. Can some offer an opinion about these results?? I have so many system illnesses that I'm dealing with that I just don't need another one! I'm sure you all can relate. Hopefully someone will respond.
Thank you
Carrie (Care Bear)
Forums
8 posts
• Page 1 of 1
Re: Possible Multiple Myeloma
Dear Carrie,
It looks as though further investigation is required. MGUS is more common in patients with rheumatologic diseases. As such, this could just be a manifestation of your MCTD and not indicative of another underlying disease. On the other hand, there are plasma cell diseases that can cause increased amount of protein in the urine, including amyloidosis and light chain deposition disease (to name a couple). The association between MGUS/myeloma and FSGS is less clear. The Mayo group reported on a handful of patients who had either MGUS or myeloma and FSGS and the FSGS got better with myeloma therapy. Whether the FSGS got better becuase the myeloma got better or whether the myeloma therapy had a direct effect on the FSGS independent of the myeloma effect is not certain.
This is a situation where you should see someone with experience in myeloma and other related disorders in addition to a kidney doctor and rheumatologist. They will need to put their heads together to come up with an appropriate plan for further work-up and treatment.
Good luck!
Pete V.
It looks as though further investigation is required. MGUS is more common in patients with rheumatologic diseases. As such, this could just be a manifestation of your MCTD and not indicative of another underlying disease. On the other hand, there are plasma cell diseases that can cause increased amount of protein in the urine, including amyloidosis and light chain deposition disease (to name a couple). The association between MGUS/myeloma and FSGS is less clear. The Mayo group reported on a handful of patients who had either MGUS or myeloma and FSGS and the FSGS got better with myeloma therapy. Whether the FSGS got better becuase the myeloma got better or whether the myeloma therapy had a direct effect on the FSGS independent of the myeloma effect is not certain.
This is a situation where you should see someone with experience in myeloma and other related disorders in addition to a kidney doctor and rheumatologist. They will need to put their heads together to come up with an appropriate plan for further work-up and treatment.
Good luck!
Pete V.
-
Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Possible Multiple Myeloma
Dr. V,
Thank you for your response! I have researched all of this and after a while it just got more complex! I went to see my Nephrologist and he ordered a serum and urine immunofixation test and a C 3 test? He also referred me to a rheumatologist whom I will see next Thursday and I will see my Nephrologist next Thursday also. I will post my results and my doctors information next week. I am still waiting on my Amyloidosis test to come back. Thanks again!
Thank you for your response! I have researched all of this and after a while it just got more complex! I went to see my Nephrologist and he ordered a serum and urine immunofixation test and a C 3 test? He also referred me to a rheumatologist whom I will see next Thursday and I will see my Nephrologist next Thursday also. I will post my results and my doctors information next week. I am still waiting on my Amyloidosis test to come back. Thanks again!
-
Care Bear
Re: Possible Multiple Myeloma
Dr. V,
I have received my Immunofixation Serum and Urine tests and it was negative for Monoclonal protein. A C3 and C4 Complement Component was performed and show both are elevated. The C4 is really elevated @ 80 mg/dL. With the Abnormal Protein Bands and peaks in the Beta and Gamma regions...what does this mean? Does this confirm that I DO NOT have Myeloma? My doctor says that based on my ANA Screen, Negative ANCA Screen and Negative dsANA Screen, I do not have Lupus, Scleroderma nor Arthritis... After all if these tests, I still have no idea what's wrong with me.
I have received my Immunofixation Serum and Urine tests and it was negative for Monoclonal protein. A C3 and C4 Complement Component was performed and show both are elevated. The C4 is really elevated @ 80 mg/dL. With the Abnormal Protein Bands and peaks in the Beta and Gamma regions...what does this mean? Does this confirm that I DO NOT have Myeloma? My doctor says that based on my ANA Screen, Negative ANCA Screen and Negative dsANA Screen, I do not have Lupus, Scleroderma nor Arthritis... After all if these tests, I still have no idea what's wrong with me.
-
Care Bear
Re: Possible Multiple Myeloma
If the serum and 24-hour urine immunofixation results are normal and the serum free light chain ratio is normal, it is highly unlikely that you have MGUS, multiple myeloma or anything else related. The money is in the kidney issue. Have you had a kidney biopsy?
Pete V.
Pete V.
-
Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Possible Multiple Myeloma
Dr. V,
I had a biopsy done about 6 years ago. The result was FSGS due to diabetes and hypertension. I didn't have diabetes nor hypertension at all. I developed both after starting on Prednisone. So, if no M protein is detected but I have these abnormal protein bands with peaks in the Beta and Gamna regions, elevated C3 and C4, negative dsANA, negative ANCA, and positive ANA with Nucleolar pattern and 1:40 titer.... What does it all mean? My Protein/Creatinine ratio has increased since starting back on Cellcept @ 3000 mg per day, now at 1507, total protein random is 615 and creatinine random is 408. Is Arthritis an option? Is the kidney disease a separate problem? Could it definitely be MCTD??
I had a biopsy done about 6 years ago. The result was FSGS due to diabetes and hypertension. I didn't have diabetes nor hypertension at all. I developed both after starting on Prednisone. So, if no M protein is detected but I have these abnormal protein bands with peaks in the Beta and Gamna regions, elevated C3 and C4, negative dsANA, negative ANCA, and positive ANA with Nucleolar pattern and 1:40 titer.... What does it all mean? My Protein/Creatinine ratio has increased since starting back on Cellcept @ 3000 mg per day, now at 1507, total protein random is 615 and creatinine random is 408. Is Arthritis an option? Is the kidney disease a separate problem? Could it definitely be MCTD??
-
Care Bear
Re: Possible Multiple Myeloma
I forgot to mention, the Immunofixation urine was a random not a 24hr
-
Care Bear
Re: Possible Multiple Myeloma
Hello All,
Well, I have been to the Rheumatologist and he has informed me that I do not have an Autoimmune Disease! I have been diagnosed with MCTD (Mixed Connective Tissue Disease) and also treated for it. Apparently my recent tests do not support this diagnosis. The doctor did say however, I could definitely have MGUS even though my IFE was negative. I am being referred to Shand's Clinic for further consulting.
Well, I have been to the Rheumatologist and he has informed me that I do not have an Autoimmune Disease! I have been diagnosed with MCTD (Mixed Connective Tissue Disease) and also treated for it. Apparently my recent tests do not support this diagnosis. The doctor did say however, I could definitely have MGUS even though my IFE was negative. I am being referred to Shand's Clinic for further consulting.
-
Anonymous
8 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories