My medical diagnosis ordeal began back in April. Losing 17 kg (37 pounds) in a month and about a 9-month-long cough started it all. At the time, 3 bouts of antibiotics had not cured it completely. I went to my local GP who sent in for an abdomen CT scan which showed mild spleen and liver enlargement, and a blood test showed a paraprotein. He then sent me to a haematologist.
After a 4th bout of antibiotics, the cough has appeared to be gone. However, it has only been a month.
I believe the original paraprotein was 3 (Australia). From memory it has remained at that level. But I don't have copies of lab reports at the moment. I've intended to ask about copies at each consultation, but have seen sidetracked with trying to provide him with detailed symptoms / problems, and trying to listen carefully to his every word.
In the early consultations, POEMS was taken off the table, as I didn't have any noticeable (or obvious?) symptoms.
I've had two bone marrow biopsies in this time. One from the right side and one from the left. They were taken about 6 weeks between each other. Both returned a plasma count of between 10-15% with normal cytogenetics. From memory the various myeloma bloods / urine have been good (or nothing to be alarmed about).
However, my haemogloblin levels were steadily dropping and dropped to 108. Yet, my last result came back as 113. Not a sharp increase, but did come after the cough cleared up. I'm assuming when it comes to anemia there are two types, myeloma-related and separate, unrelated cause. Obviously this could be just a minor spike.
My next appointment with the haematologist is in about 5 weeks time with the usual tests - FBE, sem EPG, FLC, B2M.
Two weeks ago I went into emergency due to chest pains. Came up with pericarditis and probable aortic issues. An echo has been done which shows I have bicuspid aortic value (newly discovered) with mild stenosis and severe regurgitation; and mild elevated pulmonary pressure. These heart finding are recent, so I'm in the initial stages. I don't believe the mild stenosis and severe regurgitation will change, but the elevated pulmonary may upon further investigation.
I do also have a mild form of the genetic disorder - neurofibromatosis 1. By mild I mean you wouldn't know I had the disorder, as I don't have multiple bumps. Yet I do have a optic nerve glioma.
I'm not too sure where I stand. While I don't want either myeloma or POEMS, this heart issue does raise major worries. If my anemia is myeloma related and does continue to drop, I'm frightened by the idea or having too decide between heart surgery and myeloma treatment.
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Re: Multiple myeloma, or is it now POEMS?
Hi everyone,
In my previous message I was worried about whether I had myeloma or poems. However, I did not state that my current hematologist has given me a diagnosis of MGUS.
This time I have some of my lab reports. I believe its missing some tests and the most recent labs. I apologise for the long post and for the formatting.
All test results are from this year (2016). For the sake of formatting, I've left the year out in many cases.
SERUM PROTEIN INVESTIGATION (ELECTROPHORESIS)
Result May 5 Jun 16
Total Protein 84 86 H g / L (65-85)
Albumin 40 38 g / L (38-50)
Alpha-1-Globulins 4.8 H 5.1 H g / L (2.1-3.5)
Alpha-2-Globulins 6.8 6.9 g / L (5.1-8.5)
Beta-2-Globulins 2.4 2.8 g / L (2.3-4.7)
IgG 30.2 H 30.8 H g / L (5.2-16.0)
IgA 2.16 2.02 g / L (0.85-3.50)
IgM 1.27 1.40 g / L (0.32-3.00)
Monoclonal Binding D D
IgG (kappa) 3 3
Comment
Polyclonal increase in IgG persists
Oligoclonal banding persists
SERUM BETA 2-MICROGLOBULIN
Date B 2-M (mg/L)
May 5 6.0 H (0.0-2.5)
Jun 8 4.8 H (0.0-2.5)
CUMULATIVE SERUM IMMUNOGLOBULIN (FLC) QUANTATION
Date May 5 Jun 6
Kappa FLC 90 129 mg / L (up to 20)
Kamba FLC 37 46 mg / L (up to 30)
K/L ratio 2.4 2.8 (0.3-1.6)
HAEMOTOLOGY REPORT (June 8, 2016)
Mild anaemia and neutrpenia. No abnormal cells,
no tear drops
When this test was performed I had some underlying infection, so I'm unsure if this would create issues with this test. Around this time I started to measure my oral-temperature and I was having mild-fever temperatures only late at night.
MULTIPLE BIOCHEMICAL ANALYSIS (April 6, 2016)
S CREAT 102 umol/L (60-110)
eGFR 78
Comments
eGFR is between 60 and 90 mL/min/1.73m2. This could be normal if it is stable over time.
BLOOD COUNTS
Apr 6 May 18 Jun 8 Jul 6
HGB 127 L 115 L 108 L 113 L g / L (130-180)
RBC 5.1 4.7 4.31 L 4.51 x10*12 / L (4.50-6.50)
MCV 81 79 L 77 L 77 L fL (80-100)
MCH 25 " 25 L 25 L 25 L pg (27-34)
MCHC 310 313 324 325 g / L (310-360)
RDW 15.9 16.4 17.5 17.7 % (11-17)
PLATS 204 183 160 218 (150-450)
ESR 9 28 H mm / hr (1-10)
Again sorry for the overload of information.
Looking at these results especially the blood counts (and googling stuff) I somewhat understand why my hematologist kept asking me if I had some infection. Apart from the cough, I developed an unknown serious infection that appears to have crashed my counts.
I never had access to these results until now, its somewhat confusing.
Does this look like MGUS, or am I bordering smoldering multiple myeloma?
Any help or assistance is greatly appreciated.
In my previous message I was worried about whether I had myeloma or poems. However, I did not state that my current hematologist has given me a diagnosis of MGUS.
This time I have some of my lab reports. I believe its missing some tests and the most recent labs. I apologise for the long post and for the formatting.
All test results are from this year (2016). For the sake of formatting, I've left the year out in many cases.
SERUM PROTEIN INVESTIGATION (ELECTROPHORESIS)
Result May 5 Jun 16
Total Protein 84 86 H g / L (65-85)
Albumin 40 38 g / L (38-50)
Alpha-1-Globulins 4.8 H 5.1 H g / L (2.1-3.5)
Alpha-2-Globulins 6.8 6.9 g / L (5.1-8.5)
Beta-2-Globulins 2.4 2.8 g / L (2.3-4.7)
IgG 30.2 H 30.8 H g / L (5.2-16.0)
IgA 2.16 2.02 g / L (0.85-3.50)
IgM 1.27 1.40 g / L (0.32-3.00)
Monoclonal Binding D D
IgG (kappa) 3 3
Comment
Polyclonal increase in IgG persists
Oligoclonal banding persists
SERUM BETA 2-MICROGLOBULIN
Date B 2-M (mg/L)
May 5 6.0 H (0.0-2.5)
Jun 8 4.8 H (0.0-2.5)
CUMULATIVE SERUM IMMUNOGLOBULIN (FLC) QUANTATION
Date May 5 Jun 6
Kappa FLC 90 129 mg / L (up to 20)
Kamba FLC 37 46 mg / L (up to 30)
K/L ratio 2.4 2.8 (0.3-1.6)
HAEMOTOLOGY REPORT (June 8, 2016)
Mild anaemia and neutrpenia. No abnormal cells,
no tear drops
When this test was performed I had some underlying infection, so I'm unsure if this would create issues with this test. Around this time I started to measure my oral-temperature and I was having mild-fever temperatures only late at night.
MULTIPLE BIOCHEMICAL ANALYSIS (April 6, 2016)
S CREAT 102 umol/L (60-110)
eGFR 78
Comments
eGFR is between 60 and 90 mL/min/1.73m2. This could be normal if it is stable over time.
BLOOD COUNTS
Apr 6 May 18 Jun 8 Jul 6
HGB 127 L 115 L 108 L 113 L g / L (130-180)
RBC 5.1 4.7 4.31 L 4.51 x10*12 / L (4.50-6.50)
MCV 81 79 L 77 L 77 L fL (80-100)
MCH 25 " 25 L 25 L 25 L pg (27-34)
MCHC 310 313 324 325 g / L (310-360)
RDW 15.9 16.4 17.5 17.7 % (11-17)
PLATS 204 183 160 218 (150-450)
ESR 9 28 H mm / hr (1-10)
Again sorry for the overload of information.
Looking at these results especially the blood counts (and googling stuff) I somewhat understand why my hematologist kept asking me if I had some infection. Apart from the cough, I developed an unknown serious infection that appears to have crashed my counts.
I never had access to these results until now, its somewhat confusing.
Does this look like MGUS, or am I bordering smoldering multiple myeloma?
Any help or assistance is greatly appreciated.
-
JasonJB - Name: Jayzen
2 posts
• Page 1 of 1