When I saw the nephrologist, I asked her if she thought I had myeloma. She said yes, and wanted me to have a kidney biopsy.
I had a letter come today which was also sent to my doctor, and it had my diagnosis was stage 4 chronic kidney disease, which is a shock, as I only thought I had slightly reduced kidney function. Kidney function was 70-80 last autumn and is 15-29 August this year.
Is this normal with MGUS or myeloma?
Hope someone know's more about it..
Forums
-
sharon67 - Name: sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2015
- Age at diagnosis: 48
Re: MGUS diagnosis today - confused
Summer 2015 - Creatinine 200, eGFR 20-25
Autumn 2014 - Normal renal function with creatinine 70-80
Elevated ESR
Autumn 2014 - Normal renal function with creatinine 70-80
Elevated ESR
-
sharon67 - Name: sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2015
- Age at diagnosis: 48
Re: MGUS diagnosis today - confused
Hi Sharon,
Do you know when you will be getting back the results of the kidney and bone marrow biopsies? (A kidney biopsy report would report more than just the creatinine, eGFR and associated CKD levels.)
In reading your earlier posts, you also said you had chronic anemia, right?
Can you look through your more recent lab test results and see what the following numbers are:
M-spike (aka paraprotein, abnormal protein, M-protein) level from your serum protein electrophoresis (SPEP) test. This may also be called out in a comment / interpretation section of that test.
Lambda and kappa free light chain values from the serum (blood) free light chain assay.
Hemoglobin level
Calcium level
IgG, IgA, and IgM levels from the quantified immunoglobulin tests
Please include the dates, units of measure and reference ranges for any posted lab values.
Do you know when you will be getting back the results of the kidney and bone marrow biopsies? (A kidney biopsy report would report more than just the creatinine, eGFR and associated CKD levels.)
In reading your earlier posts, you also said you had chronic anemia, right?
Can you look through your more recent lab test results and see what the following numbers are:
M-spike (aka paraprotein, abnormal protein, M-protein) level from your serum protein electrophoresis (SPEP) test. This may also be called out in a comment / interpretation section of that test.
Lambda and kappa free light chain values from the serum (blood) free light chain assay.
Hemoglobin level
Calcium level
IgG, IgA, and IgM levels from the quantified immunoglobulin tests
Please include the dates, units of measure and reference ranges for any posted lab values.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosis today - confused
I'm in England and we don't get result printouts. These were just on a letter from the hospital which was for my doctor. Not even sure if I was meant to have a copy. Will get biopsy result when I go to clinic in September. Ty
-
sharon67 - Name: sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2015
- Age at diagnosis: 48
Re: MGUS diagnosis today - confused
Sharon,
Actually, you do have the right to printouts of your health records in England. I remember hearing this statement before on this forum and the UK patient on this forum was subsequently able to get copies of his records when he was informed of this right:
http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68
Actually, you do have the right to printouts of your health records in England. I remember hearing this statement before on this forum and the UK patient on this forum was subsequently able to get copies of his records when he was informed of this right:
http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosis today - confused
Hi Sharon,
I'm from England too, up in West Yorkshire. I was diagnosed with smoldering myeloma last October. GP always prints out my results and, after difficulty with first consultant at hospital, we changed to another hospital and consultant, and my results are always there waiting for me to take home.
Just ask – they can't refuse.
Helen
I'm from England too, up in West Yorkshire. I was diagnosed with smoldering myeloma last October. GP always prints out my results and, after difficulty with first consultant at hospital, we changed to another hospital and consultant, and my results are always there waiting for me to take home.
Just ask – they can't refuse.
Helen
-
Gingerbiscuit - Name: Helen clarke
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 15th October 2014
- Age at diagnosis: 49
Re: MGUS diagnosis today - confused
Thank you, Multibilly and Helen. I will definitely ask.
-
sharon67 - Name: sharon
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2015
- Age at diagnosis: 48
17 posts
• Page 2 of 2 • 1, 2