After posting here In December, it's now my turn to go see the multiple myeloma / paraproteinemia specialist. I will be seeing one this Thursday.
I was diagnosed with an M-spike of 1 g/L (0.1 g/dl). It will be interesting to see where it is when I get the blood test again.
I keep thinking of questions, but I suppose when I see her she will ask me lots of questions and tell me about what tests will need to be done. I have learnt a bit since I first registered in December 2015. Reading lots of post, etc., my initial reason for seeing the doctor was about having strange tingling and I suppose neuropathy-type symptoms! Very sore eyes and cold feelings in my body, especially with air conditioning.
I will let you know what happens. I'm feeling very anxious, but just want it over and done with, the waiting has made it worse.
Thanks for listening.
Forums
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Ozziegirl - Name: Ozziegirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 66
Re: I'm new - have paraprotein of 1 gram
Hi all,
Well I had my first appointment with my haematologist, multiple myeloma / MGUS specialist and I was most impressed with her. She was very thorough and knowledgeable.
She asked me about my symptoms, so I told her about my feet and feeling cold all the time, throughout my body as well. even though it's very hot here. I cannot tolerate the air conditioner, it makes me feel extremely cold.
She is running all the tests, but is looking into amyloidosis! Because of these strange cold feelings and also I have had a problem with my bowel and bad constipation.
I am really confused and worried. Does anyone have any experience with this?
Thanks you
Well I had my first appointment with my haematologist, multiple myeloma / MGUS specialist and I was most impressed with her. She was very thorough and knowledgeable.
She asked me about my symptoms, so I told her about my feet and feeling cold all the time, throughout my body as well. even though it's very hot here. I cannot tolerate the air conditioner, it makes me feel extremely cold.
She is running all the tests, but is looking into amyloidosis! Because of these strange cold feelings and also I have had a problem with my bowel and bad constipation.
I am really confused and worried. Does anyone have any experience with this?
Thanks you
-
Ozziegirl - Name: Ozziegirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 66
Re: I'm new - have paraprotein of 1 gram
Ann,
Hi there. As I was reading through your symptoms, I thought of AL amyloidosis. I have it too. I discovered it in 2012, then had an autologous stem cell transplant for it, which put it into complete response. But then in 2014, I discovered I have multiple myeloma. The two are intimately connected, as they are two different types of dysfunction of the same cell type - the plasma cell.
Plasma cells are a type of immune cell that lives in the bone marrow. Its normal job is to produce antibodies. In both AL amyldoidosis and myeloma (except for nonsecretory), there is a little clone of one particular plasma cell which is making too many faulty antibody parts, in an uncontrolled way. This faulty antibody part is the "light chain".
In AL amyloidosis, the light chain folds in a particular pattern which makes it difficult for the body to clear it, so it accumulates and clogs up the tissues. Common places are kidneys, heart, nerves (causing numbness and tingling), and the intestines (causing constipation or diarrhea and / or bleeding).
In myeloma (without amyloidosis), the light chain does not fold in that particular way. But the plasma cell itself has the ability to move outside the bone marrow and set up shop elsewhere and start growing - hence bone lesions and plasmacytomas.
Myeloma can be with or without amyloidosis.
I'm not sure if this was the kind of information you were looking for, but I got on a roll!
Let us know what you find out.
Tracy
Hi there. As I was reading through your symptoms, I thought of AL amyloidosis. I have it too. I discovered it in 2012, then had an autologous stem cell transplant for it, which put it into complete response. But then in 2014, I discovered I have multiple myeloma. The two are intimately connected, as they are two different types of dysfunction of the same cell type - the plasma cell.
Plasma cells are a type of immune cell that lives in the bone marrow. Its normal job is to produce antibodies. In both AL amyldoidosis and myeloma (except for nonsecretory), there is a little clone of one particular plasma cell which is making too many faulty antibody parts, in an uncontrolled way. This faulty antibody part is the "light chain".
In AL amyloidosis, the light chain folds in a particular pattern which makes it difficult for the body to clear it, so it accumulates and clogs up the tissues. Common places are kidneys, heart, nerves (causing numbness and tingling), and the intestines (causing constipation or diarrhea and / or bleeding).
In myeloma (without amyloidosis), the light chain does not fold in that particular way. But the plasma cell itself has the ability to move outside the bone marrow and set up shop elsewhere and start growing - hence bone lesions and plasmacytomas.
Myeloma can be with or without amyloidosis.
I'm not sure if this was the kind of information you were looking for, but I got on a roll!
Let us know what you find out.
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: I'm new - have paraprotein of 1 gram
Thank you Tracy for responding. I'm so sorry this has happened to you at such a young age, so much to take on board.
I am so tired today, just got back from having fasting blood test, checking the light chains, osteoporosis, etc., etc. Can't remember them all. Got the big bottle for the urine test.
It's a very complicated disease and you were so good the way you explained things, and I thank you for that. She did explain that I could go on to get multiple myeloma and other things, all too much to take in at once, but I know she is very thorough, and had a nice bedside manner, which helps enormously.
How are you feeling now, do hope you are going well! You sound very strong.
Best wishes to you and many thanks.
Ann.
Next week I go and have the x-rays. If she can't figure the puzzle out, she will do bone marrow biopsy. Seeing her again in 2 weeks. It's the waiting that's the worst, I think.
I am so tired today, just got back from having fasting blood test, checking the light chains, osteoporosis, etc., etc. Can't remember them all. Got the big bottle for the urine test.
It's a very complicated disease and you were so good the way you explained things, and I thank you for that. She did explain that I could go on to get multiple myeloma and other things, all too much to take in at once, but I know she is very thorough, and had a nice bedside manner, which helps enormously.
How are you feeling now, do hope you are going well! You sound very strong.
Best wishes to you and many thanks.
Ann.
Next week I go and have the x-rays. If she can't figure the puzzle out, she will do bone marrow biopsy. Seeing her again in 2 weeks. It's the waiting that's the worst, I think.
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Ozziegirl - Name: Ozziegirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 66
Re: I'm new - have paraprotein of 1 gram
I am wondering g if someone could interpret this for me. 
My kappa light chain result is 16 mg/l - in the normal range of (3 - 19)
Lambda light chain result is 7 mg/L - in normal range (6 - 26)
But my kappa / lambda ratio is 2.29, outside the normal range of 0.25-1.65.
Can't figure it out, I have a small almost undetected M spike.
Thank you.
My kappa light chain result is 16 mg/l - in the normal range of (3 - 19)
Lambda light chain result is 7 mg/L - in normal range (6 - 26)
But my kappa / lambda ratio is 2.29, outside the normal range of 0.25-1.65.
Can't figure it out, I have a small almost undetected M spike.
Thank you.
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Ozziegirl - Name: Ozziegirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 66
Re: I'm new - have paraprotein of 1 gram
Hi Ozziegirl,
Have you received a diagnosis yet? Also, was this your first set of free light chain tests or did you have one earlier to compare it to? Given you have a small M-spike and therefore some sort of monoclonal gammopathy, it's not that unexpected that your free light chains would be slightly off.
Your ratio is just barely over the normal limit (people start to worry about progressing to active multiple myeloma when the ratio starts to hit in the range of 100, so 2.29 is a tiny figure). If you look at your kappa and lambda values, you can see that your kappa is pushing towards the upper limit of the normal range, while the lambda is pushing to the lower limit of its range. This is what is throwing your ratio off.
But sometimes a high ratio coupled with a normal kappa and lambda value can suggest bone marrow suppression (aka myelosuppression) coupled with monoclonal gammopathy. You would simply check your red blood cell (RBC), white blood cell (WBC) and platelet levels (all found on your CBC lab test) to see if these were all in range. If one of these values were low, then you would discuss the possibility of myelosuppression with your doc. But I believe one normally almost only sees myelosuppression as a result of chemo treatment (which you aren't receiving).
In any case, this would be a good thing to discuss with your doc.
Have you received a diagnosis yet? Also, was this your first set of free light chain tests or did you have one earlier to compare it to? Given you have a small M-spike and therefore some sort of monoclonal gammopathy, it's not that unexpected that your free light chains would be slightly off.
Your ratio is just barely over the normal limit (people start to worry about progressing to active multiple myeloma when the ratio starts to hit in the range of 100, so 2.29 is a tiny figure). If you look at your kappa and lambda values, you can see that your kappa is pushing towards the upper limit of the normal range, while the lambda is pushing to the lower limit of its range. This is what is throwing your ratio off.
But sometimes a high ratio coupled with a normal kappa and lambda value can suggest bone marrow suppression (aka myelosuppression) coupled with monoclonal gammopathy. You would simply check your red blood cell (RBC), white blood cell (WBC) and platelet levels (all found on your CBC lab test) to see if these were all in range. If one of these values were low, then you would discuss the possibility of myelosuppression with your doc. But I believe one normally almost only sees myelosuppression as a result of chemo treatment (which you aren't receiving).
In any case, this would be a good thing to discuss with your doc.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: I'm new - have paraprotein of 1 gram
Thank you for responding Multibilly,
My platelets count is 224 (ref: 150-450),
RCC 4.1 (ref: 3.8 - 5.8).
WCC 4.9 (ref: 4.0-11.0)
Taken this year on 7 January, 2016.
I haven't got a formal diagnosis yet. Have to go back in 3 months, but going to organise a biopsy to rule out amyloidosis.
My M-spike was undetectable this time. Yes, this is my first free light test.
Thank you for helping understand these tests.
Regards,
Ann.
P.S. - Different lab this time. Maybe that's why M-spike not detected
My platelets count is 224 (ref: 150-450),
RCC 4.1 (ref: 3.8 - 5.8).
WCC 4.9 (ref: 4.0-11.0)
Taken this year on 7 January, 2016.
I haven't got a formal diagnosis yet. Have to go back in 3 months, but going to organise a biopsy to rule out amyloidosis.
My M-spike was undetectable this time. Yes, this is my first free light test.
Thank you for helping understand these tests.
Regards,
Ann.
P.S. - Different lab this time. Maybe that's why M-spike not detected
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Ozziegirl - Name: Ozziegirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 66
Re: I'm new - have paraprotein of 1 gram
Hi Ozziegirl,
I'm not a doc, but your CBC values look pretty good to me.
When you had your M-spike last measured, did they also run a serum immunofixation test? The serum protein electrophoresis tests measures the M-spike, but is not that accurate at low levels. On the other hand, the serum immunofixation test tells you pretty accurately if any monoclonal protein is in your system, although it won't measure the actual amount of monoclonal protein (M-spike).
I'm not a doc, but your CBC values look pretty good to me.
When you had your M-spike last measured, did they also run a serum immunofixation test? The serum protein electrophoresis tests measures the M-spike, but is not that accurate at low levels. On the other hand, the serum immunofixation test tells you pretty accurately if any monoclonal protein is in your system, although it won't measure the actual amount of monoclonal protein (M-spike).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: I'm new - have paraprotein of 1 gram
Thanks again Multibilly,
I have looked at my test and found one that says:
Immunofixation studies identified the irregularity in the gamma region on routine serum electrophoresis as monoclonal IgG kappa 1 g/L.
This was on the 16 November /2015.
My latest test, which I think is just called a haematology test where they show lots of things like sodium, potassium creatinine,cholesterol, etc, etc, it says paraprotein 0 (N) the N meaning normal.
The test also says
electrophoretic pattern was normal by visual assessment, paraprotien not detected.
I also have a later test of
WCC of 4.56
RCC of 4.37.
This date is 4 March 2016; little difference.
Previous on 7 January 2016:
WCC of 4.9
RCC of 4.1
I hope I got it right, my mind gets a bit jumbled I'm afraid.
Thanks again,
Ann
I have looked at my test and found one that says:
Immunofixation studies identified the irregularity in the gamma region on routine serum electrophoresis as monoclonal IgG kappa 1 g/L.
This was on the 16 November /2015.
My latest test, which I think is just called a haematology test where they show lots of things like sodium, potassium creatinine,cholesterol, etc, etc, it says paraprotein 0 (N) the N meaning normal.
The test also says
electrophoretic pattern was normal by visual assessment, paraprotien not detected.
I also have a later test of
WCC of 4.56
RCC of 4.37.
This date is 4 March 2016; little difference.
Previous on 7 January 2016:
WCC of 4.9
RCC of 4.1
I hope I got it right, my mind gets a bit jumbled I'm afraid.
Thanks again,
Ann
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Ozziegirl - Name: Ozziegirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 66
Re: MGUS with CAD and AIHA
I was reading the postings in the thread "MGUS with CAD and AIHA" and I was wondering if anyone could help me with a question.
I feel cold all the time, even in the warm weather. Air conditioning makes me feel very uncomfortable,
I am thinking it could be cold agglutinin disease (CAD).
I am not anaemic at this point in time.
Thank you .
I feel cold all the time, even in the warm weather. Air conditioning makes me feel very uncomfortable,
I am thinking it could be cold agglutinin disease (CAD).
I am not anaemic at this point in time.
Thank you .
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Ozziegirl - Name: Ozziegirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 66
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