I have been feeling very weak, tired, and fatigued and found out that I am anemic, but it is not related to a deficiency with iron, vitamin B, or folate. I am also leukopenic, with low WBC counts that vary. At times I have been said to be neutropenic and diagnosed with symptomatic lymphocytosis. My lymphocytes and neutrophils appear to be fluctuating from time to time as well.
My total blood and urine protein has been on the rise and is not getting any lower. Every few months it seems to be climbing as well with my albumin level. My total blood protein is now 8.4 mg/dL and albumin is 5.5 mg/dL.
My IgM antibody tested low on my last recent test of around 21 units. My blood calcium also has been in the 9.5-10.1 range. My BUN level and creatinine levels are now borderline high around 20 and 1.30.
I am also now passing blood in my urine and have been diagnosed with microscopic hematuria. My lower back in my spine area hurts severe and my left and right rib cages hurt very bad as well. Note the left side hurts more than the right side.
My hematologist / oncologist told me not to worry at first and that he will keep a eye on things, but there are many questions left unanswered. I only seem him once a year and i am concerned about the possibility that something serious may be overlooked. I just want to find out what is going on make sure that if something is wrong that it is caught on time. I will make sure I bring any concern to their attention next appointment.
I was just wondering from your community's point of view if this sounds like a risk of multiple myeloma or something similar.
I know that it is a fairly rare disease, but I feel horrible for being 23 years old with severe fatigue, weakness, 40-pound weight loss last year, muscle mass loss, random sharp brief bone pain and aches and all.
Any feedback would be greatly appreciated from anyone who has had similar problems.
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Re: High blood and urine protein, low IgM
Hi Derek,
Welcome to the forum. I'm sorry you are experiencing so many issues.
My initial reaction is that you ought to seek out a second opinion from a top hematologist that can actually diagnose your condition. IMHO, there are enough symptoms that you listed here to suggest running a few additional tests (free light chain assay, serum immunofixation and serum protein electrophoresis) to rule out any sort of monoclonal gammopathy. But other things such as an autoimmune disease or some underlying malignancy may also cause many of your symptoms. Only a doc can sort that out.
You said your IgM was low. Was your IgG and IgA also measured? Also, please note that it really helps if you include any normal ranges when posting any lab values.
I see you are in Maine. Given your complex presentation, I might suggest a road trip down to Boston to get evaluated at a large medical center with many specialists (such as Dana Farber).
Welcome to the forum. I'm sorry you are experiencing so many issues.
My initial reaction is that you ought to seek out a second opinion from a top hematologist that can actually diagnose your condition. IMHO, there are enough symptoms that you listed here to suggest running a few additional tests (free light chain assay, serum immunofixation and serum protein electrophoresis) to rule out any sort of monoclonal gammopathy. But other things such as an autoimmune disease or some underlying malignancy may also cause many of your symptoms. Only a doc can sort that out.
You said your IgM was low. Was your IgG and IgA also measured? Also, please note that it really helps if you include any normal ranges when posting any lab values.
I see you are in Maine. Given your complex presentation, I might suggest a road trip down to Boston to get evaluated at a large medical center with many specialists (such as Dana Farber).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High blood and urine protein, low IgM
Thank you for responding so promptly.
I know that I have had the immunofixation serum testing done once, and that it said no monoclonal immunoglubulin detected, but that was back in 2014 when my protein levels were just under what was considered elevated. They are much higher now.
I also have has the serum protein electrophoresis test done, but it only shows Total protein, albumin, alpha-1 globulins, alpha-2 globulins, beta globulins, and gamma globulins. This was the test that had found the lymphocytosis at that time.
I did read somewhere online saying a light chain test will be better for IgM related problems. I don't think I have had a light chain test done yet. I know the doctor has told me whatever is going on involves my B-cells in my bone marrow.
Also I have been getting frequent infections. I just got over a H. pylori infection and then was told I more than likely have prostatitis. I am currently waiting for results on that. I also have been having severe abdominal pains and was told I more than likely have Chron's disease as well. I pretty much failed my IBD Pannel with pretty much a trippled IgA level and doubled IgG level, but i am uncertain if theses are the same antibodies found in the blood. I know that I feel much better since getting over the H. Pylori infection and for the most part my BMs are normal once again. I don't understand how I could have Crohn's disease. They did a EGD and colonoscopy and ruled out ulcerative colitis.
I will be seeing my hematologist/oncologist in a couple or few months from now and he probably will order my yearly routine blood tests with another immunofix. serum and serum protein electrophoresis.
This all is just really confusing and it is hard to tell family members that I just don't feel well all the time and they get sick of it. All of this stuff has occurred in a year and a half and the protein levels are steadily increasing without going down at all in between tests.
I know that I have had the immunofixation serum testing done once, and that it said no monoclonal immunoglubulin detected, but that was back in 2014 when my protein levels were just under what was considered elevated. They are much higher now.
I also have has the serum protein electrophoresis test done, but it only shows Total protein, albumin, alpha-1 globulins, alpha-2 globulins, beta globulins, and gamma globulins. This was the test that had found the lymphocytosis at that time.
I did read somewhere online saying a light chain test will be better for IgM related problems. I don't think I have had a light chain test done yet. I know the doctor has told me whatever is going on involves my B-cells in my bone marrow.
Also I have been getting frequent infections. I just got over a H. pylori infection and then was told I more than likely have prostatitis. I am currently waiting for results on that. I also have been having severe abdominal pains and was told I more than likely have Chron's disease as well. I pretty much failed my IBD Pannel with pretty much a trippled IgA level and doubled IgG level, but i am uncertain if theses are the same antibodies found in the blood. I know that I feel much better since getting over the H. Pylori infection and for the most part my BMs are normal once again. I don't understand how I could have Crohn's disease. They did a EGD and colonoscopy and ruled out ulcerative colitis.
I will be seeing my hematologist/oncologist in a couple or few months from now and he probably will order my yearly routine blood tests with another immunofix. serum and serum protein electrophoresis.
This all is just really confusing and it is hard to tell family members that I just don't feel well all the time and they get sick of it. All of this stuff has occurred in a year and a half and the protein levels are steadily increasing without going down at all in between tests.
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Brut3Forc3d - Name: Derek
3 posts
• Page 1 of 1