I was diagnosed with MGUS in July. And possibly SLE (systemic lupus erythematosus). I was sent to a rheumatologist by the diagnosing oncologist. This week the rheumatologist ran tests said I do not have SLE. I do have arthritis, hands, neck, and spine are the worst.
I go back to the kidney doctor tomorrow. There was still protein in my urine last month, but kidney function is good. Another three batches of tests last week. Still waiting on the 24-hour urine I took in today and the ANA results from blood drawn on Monday. Oncologist next Wednesday to check my ANA to see if the M-spike has not jumped. Just finished the tests for him, everything is coming back unchanged or in normal range, but still waiting for the ANA.
So far they can't figure out what is causing the kidney problems or why I feel so ill. And I just keep getting weaker and weaker. Tired all the time, even right after I get up. Pains in my stomach, intestines, lower back, hands, feet, and neck. So tired of not being able to feel awake and alert, staying awake is a real struggle. In July my ANA was high, that and the kidney biopsy they did, as well as the other blood tests was what the oncologist based my MGUS diagnosis on.
These are my tests results from last week and Monday, ordered by the kidney doctor and oncologist (still waiting for the ANA, 24-hour urine):
DNA (DS) Ab 205 IU/mL
Microalbumin 48.700 mg/dL
Creatinine, UR 54.2 mg/dL
UR Alb/Cre 898.5 mcg/mgCreat
UrProt 73.0 mg/dL
Creatinine, URM 54.2 mg/dL
Ur Prot Creat Ratio 1.35
Urobilinogen - UR 0.2 mg/dl
U WBC 5 - 10
Bacteria - UR 1+
WBC Clumps - UR Rare
Mucous 1+
Protein - UR 100 mg/dL
UrProt mg per dL 73.0 mg/dL
Creatinine, UR 54.2 mg/dL
Ur Prot Creat Ratio 1.35 Ratio
Creatinine 0.58 mg/dL
Estimated GFR >60
IgG 1046 mg/dL
IgA 350 mg/dL
IgM 107 mg/dL
LDH 152 U/L
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Diagnosed with MGUS - am I supposed to feel this awful?
Last edited by Suesan0814 on Wed Sep 02, 2015 8:53 am, edited 1 time in total.
Re: Diagnosed with MGUS - am I supposed to feel this awful?
Suesan0814,
Sorry to hear about all the troubles you are having.
While these tests are useful, they aren't the key tests for determining if one has MGUS or not (they don't tell you if you have any monoclonal proteins in your system or not).
If MGUS was suspected, the doc should have run a serum immunofixation (IFE), serum protein electrophoresis (SPEP) and a free light chain assay. Do you have those results? Note that an ANA test doesn't provide this information.
But if your doctors are correct about the MGUS diagnosis, you should seek out a multiple myeloma specialist to confirm those results (not a nephrologist or rheumatologist or general oncologist). Below is where you can find these kind of specialists in Michigan.
https://myelomabeacon.org/resources/treatment-centers/#Michigan
Hope this helps a bit.
Sorry to hear about all the troubles you are having.
While these tests are useful, they aren't the key tests for determining if one has MGUS or not (they don't tell you if you have any monoclonal proteins in your system or not).
If MGUS was suspected, the doc should have run a serum immunofixation (IFE), serum protein electrophoresis (SPEP) and a free light chain assay. Do you have those results? Note that an ANA test doesn't provide this information.
But if your doctors are correct about the MGUS diagnosis, you should seek out a multiple myeloma specialist to confirm those results (not a nephrologist or rheumatologist or general oncologist). Below is where you can find these kind of specialists in Michigan.
https://myelomabeacon.org/resources/treatment-centers/#Michigan
Hope this helps a bit.
Last edited by Multibilly on Wed Sep 02, 2015 8:56 am, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Diagnosed with MGUS - am I supposed to feel this awful?
Thank you, Multibilly,
Sorry for the mess. Hope this will get better results. I really appreciate your advice.
The tests you are describing were run before I was referred to the oncologist, including the kidney biopsy. I can post those results as well.
Again, thank you.
Update with tests you requested:
ANA SCREEN positive
Faint IgM Lambda band identified in gamma region. The significance of this faint band is unclear. Recommend repeat serum protein electrophoresis and immunofixation in 3-6 months to determine if this process is evolving or regressing.
Albumin SPE 3.5 g/dL
This is my doctor: I did a Michigan search for doctors who diagnosis and treat multiple myeloma
William L Scott MD; Specialty: Hematology & Oncology
Dr, Scott said my kidney biopsy was negative for multiple myeloma and wanted to test in three months to see if the M-spike increased. I had the blood drawn Monday for those tests, and still waiting for the ANA. He also said he would do a bone biopsy if anything changed.
Sorry for the mess. Hope this will get better results. I really appreciate your advice.
The tests you are describing were run before I was referred to the oncologist, including the kidney biopsy. I can post those results as well.
Again, thank you.
Update with tests you requested:
ANA SCREEN positive
Faint IgM Lambda band identified in gamma region. The significance of this faint band is unclear. Recommend repeat serum protein electrophoresis and immunofixation in 3-6 months to determine if this process is evolving or regressing.
Albumin SPE 3.5 g/dL
This is my doctor: I did a Michigan search for doctors who diagnosis and treat multiple myeloma
William L Scott MD; Specialty: Hematology & Oncology
Dr, Scott said my kidney biopsy was negative for multiple myeloma and wanted to test in three months to see if the M-spike increased. I had the blood drawn Monday for those tests, and still waiting for the ANA. He also said he would do a bone biopsy if anything changed.
Re: Diagnosed with MGUS - am I supposed to feel this awful?
Just got my new light strings and I've had an increase in the last three months:
Kappa free light chain - 2.68 mg/dL
Lambda free light chain - 1.58 mg/dL
Kappa / lambda FLC ratio - 1.70
Kappa free light chain - 2.68 mg/dL
Lambda free light chain - 1.58 mg/dL
Kappa / lambda FLC ratio - 1.70
Re: Diagnosed with MGUS - am I supposed to feel this awful?
These free light chain values are just the tiniest bit out of the normal range. I'm not a doc, but I wouldn't be worrying about these kinds of levels. If these have increased since your last test, you must have been in the normal range 3 months ago?
Normal values are:
Kappa: 0.33–1.94 mg/dL
Lambda: 0.57–2.63 mg/dL
Kappa/lambda ratio: 0.26–1.65
Normal values are:
Kappa: 0.33–1.94 mg/dL
Lambda: 0.57–2.63 mg/dL
Kappa/lambda ratio: 0.26–1.65
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Diagnosed with MGUS - am I supposed to feel this awful?
Thank you so much. I'm sitting here worried because the ratio is imbalanced now. This is all so new to me.
Re: Diagnosed with MGUS - am I supposed to feel this awful?
It is overhwhelming at first.
If you can find you serum protein electrophoresis test (SPEP), and look for an entry called abnormal protein band (might also be called paraprotein, M-protein, monoclonal protein, etc), that will be your M-spike. It would be helpful to know what that value is.
The IFE is saying that you only have a faint band of IgM, so your SPEP may not even be able to measure the IgM M-spike ... or it would likely be very small if they can measure it.
If you can find you serum protein electrophoresis test (SPEP), and look for an entry called abnormal protein band (might also be called paraprotein, M-protein, monoclonal protein, etc), that will be your M-spike. It would be helpful to know what that value is.
The IFE is saying that you only have a faint band of IgM, so your SPEP may not even be able to measure the IgM M-spike ... or it would likely be very small if they can measure it.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Diagnosed with MGUS - am I supposed to feel this awful?
In addition to all of the helpful information that Multibilly has given you, have you had a bone marrow biopsy, skeletal survey or MRI/PET of your skeleton to look for bone lesions? These are key in diagnosing myeloma in addition to all of the blood and urine tests. What are the results of your CBC and chem profile blood tests? Please include normal ranges in addition to the units of measurement of each test that you've provided..
Hopefully the cause of your pain and fatigue are found soon.
Hopefully the cause of your pain and fatigue are found soon.
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Diagnosed with MGUS - am I supposed to feel this awful?
Hi Suesan,
This stuff is so overwhelming in the beginning, so don't get overly anxious that you feel overwhelmed - it's normal at this stage!
I just wanted to chime in to ask if your kidney biopsy was tested for AL amyloidosis? The test for AL amyloidosis is Congo red stain. It's not necessarily done routinely, so some doctor somewhere along the way would have had to ask specifically for it.
Tracy
This stuff is so overwhelming in the beginning, so don't get overly anxious that you feel overwhelmed - it's normal at this stage!
I just wanted to chime in to ask if your kidney biopsy was tested for AL amyloidosis? The test for AL amyloidosis is Congo red stain. It's not necessarily done routinely, so some doctor somewhere along the way would have had to ask specifically for it.
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Diagnosed with MGUS - am I supposed to feel this awful?
NStewart wrote:
I had a full skeletal. No lesions. Just bone spurs, lots of arthritis. The oncologist said he'd do a rib biopsy if my count changes. I will post the CBC profile. I had it in at first, but there was so much that I shortened the tests, especially ones that fell within the normal range.
In addition to all of the helpful information that Multibilly has given you, have you had a bone marrow biopsy, skeletal survey or MRI/PET of your skeleton to look for bone lesions? These are key in diagnosing myeloma in addition to all of the blood and urine tests. What are the results of your CBC and chem profile blood tests? Please include normal ranges in addition to the units of measurement of each test that you've provided.
I had a full skeletal. No lesions. Just bone spurs, lots of arthritis. The oncologist said he'd do a rib biopsy if my count changes. I will post the CBC profile. I had it in at first, but there was so much that I shortened the tests, especially ones that fell within the normal range.
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