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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Re: MGUS diagnosis today - confused

by sharon67 on Thu Aug 20, 2015 7:00 am

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..

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

by sharon67 on Thu Aug 20, 2015 7:10 am

Summer 2015 - Creatinine 200, eGFR 20-25
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

by Multibilly on Thu Aug 20, 2015 8:46 am

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.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: MGUS diagnosis today - confused

by sharon67 on Fri Aug 21, 2015 9:36 am

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

by Multibilly on Fri Aug 21, 2015 9:51 am

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

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: MGUS diagnosis today - confused

by Gingerbiscuit on Fri Aug 21, 2015 5:39 pm

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

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

by sharon67 on Mon Aug 24, 2015 3:35 am

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

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