Howdy,
I am new to the Forum and from New Zealand, which has a public medical system, where most of the specialists (haematologists) work within this depending on where you live, and you have to be referred in this via your general practitioner (GP's).
In NZ most GP's deal with low risk MGUS and there is a treatment pathway that they have to follow and don't refer low risk cases to see a haematologists.
In my case, my bloods fall within the range for low risk for progression, the sFLC also being within the normal range, including my Hgb. But my calcium level is slightly high and my eGFR is lower than what it should be for my ripe old age of 47. I have also been experiencing back pain and had a spinal X-ray, which showed mild bone loss of T7 with no known chronicity. I have also been feeling tired.
Thus knowing I have these symptoms should I be insisting on seeing a specialist? And do these symptoms mean that this is not MGUS but could be smoldering myeloma or such?
The lack of definitive knowledge around this is really hard and I worry very much, and want to be as proactive as I can, as I have 3 children.
I have not had a bone marrow biopsy as this can't be done until you see a specialist.
I would really value some input on what direction I should be taking, I am not happy to sit and wait for another 6 months until my next bloods are due.
Cheers
Forums
When do symptoms change a MGUS diagnosis?
Last edited by KiwiMum on Sat Aug 09, 2014 6:50 pm, edited 1 time in total.
-
KiwiMum - Name: Suzanne M
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: July
- Age at diagnosis: 47
Re: When do symptoms change an MGUS diagnosis?
Welcome to the forum, Suzanne. There are a few other members and regular participants who are from New Zealand, so you're definitely not alone.
There are actually well defined criteria for differentiating between MGUS, smoldering (asymptomatic) myeloma, and (symptomatic) multiple myeloma based on the results of blood testing, x-rays, and bone marrow biopsies. You can find the criteria described rather clearly in the Wikipedia article on multiple myeloma in the "diagnostic criteria" section of the article:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
You'll see from the criteria that some of the symptoms you have described could be signs -- and we emphasize "could" -- that an MGUS diagnosis is not correct. For this reason, we would agree with your sense that it is time for you to be seen by a specialist who will be able to investigate your case in more detail. A bone marrow biopsy, for example, would seem like a useful additional test to carry out.
As you pursue this further, you may hear that the diagnostic criteria differentiating MGUS, smoldering myeloma, and multiple myeloma are somewhat in flux. That is true. Researchers are currently revising the criteria, with a focus on the boundaries between smoldering myeloma and multiple myeloma.
But this ongoing effort by international researchers does not really change the fact that you probably should be seen by a specialist to assess your case more thoroughly.
Best of luck to you, and please keep us posted on what you find out and whether you have any additional questions.
There are actually well defined criteria for differentiating between MGUS, smoldering (asymptomatic) myeloma, and (symptomatic) multiple myeloma based on the results of blood testing, x-rays, and bone marrow biopsies. You can find the criteria described rather clearly in the Wikipedia article on multiple myeloma in the "diagnostic criteria" section of the article:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
You'll see from the criteria that some of the symptoms you have described could be signs -- and we emphasize "could" -- that an MGUS diagnosis is not correct. For this reason, we would agree with your sense that it is time for you to be seen by a specialist who will be able to investigate your case in more detail. A bone marrow biopsy, for example, would seem like a useful additional test to carry out.
As you pursue this further, you may hear that the diagnostic criteria differentiating MGUS, smoldering myeloma, and multiple myeloma are somewhat in flux. That is true. Researchers are currently revising the criteria, with a focus on the boundaries between smoldering myeloma and multiple myeloma.
But this ongoing effort by international researchers does not really change the fact that you probably should be seen by a specialist to assess your case more thoroughly.
Best of luck to you, and please keep us posted on what you find out and whether you have any additional questions.
Re: When do symptoms change an MGUS diagnosis?
Thank you so much for your advice, it really does seem like a lonely path out there sometimes.
I will press my doctor for a referral and hope for the best results after that.
I will press my doctor for a referral and hope for the best results after that.
-
KiwiMum - Name: Suzanne M
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: July
- Age at diagnosis: 47
Re: When do symptoms change an MGUS diagnosis?
Hi Suzanne,
As usual, the Beacon staff is right on with their advice. If you are feeling tired, you may also want to review your CBC lab results and see if you have any signs of anemia (low hemoglobin / Hb, low red blood cell count / RBC). X-rays also aren't the greatest at evaluating bone density or the presence of early lytic lesions that are associated with multiple myeloma, so you might want to investigate getting an MRI of your lower spine when you hook up with a specialist ... and maybe get what is known as DEXA scan to evaluate your overall bone density.
Best of luck to you and welcome to the forum. Also, try not to feel too lonely ... there are a lot of great folks on this site that can help you and share stories of their journey.
As usual, the Beacon staff is right on with their advice. If you are feeling tired, you may also want to review your CBC lab results and see if you have any signs of anemia (low hemoglobin / Hb, low red blood cell count / RBC). X-rays also aren't the greatest at evaluating bone density or the presence of early lytic lesions that are associated with multiple myeloma, so you might want to investigate getting an MRI of your lower spine when you hook up with a specialist ... and maybe get what is known as DEXA scan to evaluate your overall bone density.
Best of luck to you and welcome to the forum. Also, try not to feel too lonely ... there are a lot of great folks on this site that can help you and share stories of their journey.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: When do symptoms change an MGUS diagnosis?
Howdy,
Thanks so much for your reply.
I am down for a bone density scan, but not sure when this is happening. It could be a 4 week wait. I am premenopausal, so really loss of bone, even mild, should not be happening.
My Hgb is normal, but I have chronic low ferritin levels.
I suppose the big take for me here is that you have to push and push for your own sake. I will be emailing my GP to ask for a specialist appointment. Being a public system there will probably be a wait.
This forum and website have been very helpful to help me work things through, so I put out a big "much appreciated" and thank you.
Another question, with the initial results of my IgG M-spike which was 14.9 g/L kappa, my IgM was also high at 2.7 g/L. I know that this sometimes happens in response to an infection, but I was well at the time of this test. Any ideas?
Thanks so much for your reply.
I am down for a bone density scan, but not sure when this is happening. It could be a 4 week wait. I am premenopausal, so really loss of bone, even mild, should not be happening.
My Hgb is normal, but I have chronic low ferritin levels.
I suppose the big take for me here is that you have to push and push for your own sake. I will be emailing my GP to ask for a specialist appointment. Being a public system there will probably be a wait.
This forum and website have been very helpful to help me work things through, so I put out a big "much appreciated" and thank you.
Another question, with the initial results of my IgG M-spike which was 14.9 g/L kappa, my IgM was also high at 2.7 g/L. I know that this sometimes happens in response to an infection, but I was well at the time of this test. Any ideas?
-
KiwiMum - Name: Suzanne M
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: July
- Age at diagnosis: 47
Re: When do symptoms change a MGUS diagnosis?
Hmmm, I'm not a doctor, so keep in that in mind as your read this. There are some other tests like the Total Iron Binding Capacity, Transferrin Iron Saturation Percentage, etc that doctors use to figure out the total puzzle for iron disorders. I just went through this with my GP and I'm going to guess that you will need these other tests to figure out just what the implications are for having a chronically low ferritin level, a normal Hb level, and feeling fatigued.
If I understand you correctly, you have IgG kappa type MGUS, right? And your M-spike is 14.9 g/L (1.49 g/dL here in the USA). And you have an elevated IgM level at 2.7 g/L (270 mg/dL here in the USA).
An elevated IgM can indicate different things, including:
(from http://www.webmd.com/a-to-z-guides/immunoglobulins?page=2)
"... High levels of IgM can mean macroglobulinemia, early viral hepatitis, mononucleosis, rheumatoid arthritis, kidney damage (nephrotic syndrome), or a parasite infection is present. Because IgM antibodies are the type that form when an infection occurs for the first time, high levels of IgM can mean a new infection is present."
It's a bit difficult and dangerous to figure out these kinds of issues out on a forum like this. Seems like you should really be sitting down with your GP and oncologist to sort all this out.
But I hope this helps get you pointed in the right direction. Others on the forum may have some other ideas to throw your way.
If I understand you correctly, you have IgG kappa type MGUS, right? And your M-spike is 14.9 g/L (1.49 g/dL here in the USA). And you have an elevated IgM level at 2.7 g/L (270 mg/dL here in the USA).
An elevated IgM can indicate different things, including:
(from http://www.webmd.com/a-to-z-guides/immunoglobulins?page=2)
"... High levels of IgM can mean macroglobulinemia, early viral hepatitis, mononucleosis, rheumatoid arthritis, kidney damage (nephrotic syndrome), or a parasite infection is present. Because IgM antibodies are the type that form when an infection occurs for the first time, high levels of IgM can mean a new infection is present."
It's a bit difficult and dangerous to figure out these kinds of issues out on a forum like this. Seems like you should really be sitting down with your GP and oncologist to sort all this out.
But I hope this helps get you pointed in the right direction. Others on the forum may have some other ideas to throw your way.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: When do symptoms change a MGUS diagnosis?
Greetings Suzanne - I had read your post earlier but didn't have the time to respond just yet.
First, welcome to the forum. I think you'll find that there is an abundance of solid information on this site.
As Mountain Guy mentioned, we are not physicians and sometimes it is difficult to understand specific cases or offer very good medical advice.
As for my own experience, I am IgG kappa, m-spike 1.0 (it's varied a little bit). In the past I had anemia found by low ferritin although my hemoglobin was normal (albeit borderline).
I also had a dex scan which showed mild thinning of bones. I'm 51 years old but I am premenopausal as well.
Whatever your outcome, I wish you the best and stay close to these forums.
First, welcome to the forum. I think you'll find that there is an abundance of solid information on this site.
As Mountain Guy mentioned, we are not physicians and sometimes it is difficult to understand specific cases or offer very good medical advice.
As for my own experience, I am IgG kappa, m-spike 1.0 (it's varied a little bit). In the past I had anemia found by low ferritin although my hemoglobin was normal (albeit borderline).
I also had a dex scan which showed mild thinning of bones. I'm 51 years old but I am premenopausal as well.
Whatever your outcome, I wish you the best and stay close to these forums.
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: When do symptoms change a MGUS diagnosis?
Thank you for your welcome and your reply.
I suppose the confusing thing for me is that I thought bone loss was part of the CRAB symptoms. Did this change your MGUS status after your DEXa scan?
Many thanks
I suppose the confusing thing for me is that I thought bone loss was part of the CRAB symptoms. Did this change your MGUS status after your DEXa scan?
Many thanks
-
KiwiMum - Name: Suzanne M
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: July
- Age at diagnosis: 47
Re: When do symptoms change a MGUS diagnosis?
Suzanne -
That's a very good question! I had wondered that myself, but for me it wasn't.
There was a previous post under the MGUS forum which I had originated,
"Is osteoporosis / osteopenia a risk factor in MGUS?," Myeloma Beacon forum discussion started July 18, 2014.
I had the same concerns as you. My DEXA or DEX scan revealed mild osteopenia. This is not osteoporosis, but it does show some thinning.
Evidently this is not a "risk" factor for progression. Keep in mind that every person is unique in what is found on their tests and procedures, so your results may be similar to mine or different, I do not know. I found that osteopenia, especially since I am premenopausal, seemed a little odd. Because of that, I kind of pushed for a BMB. I had that done just yesterday and the results should be back in two weeks time.
I know you will have a bone scan sometime in the next few months so that should reveal more for you. In the meantime, keep asking questions, it is so good to get good information based on facts!
Toni
That's a very good question! I had wondered that myself, but for me it wasn't.
There was a previous post under the MGUS forum which I had originated,
"Is osteoporosis / osteopenia a risk factor in MGUS?," Myeloma Beacon forum discussion started July 18, 2014.
I had the same concerns as you. My DEXA or DEX scan revealed mild osteopenia. This is not osteoporosis, but it does show some thinning.
Evidently this is not a "risk" factor for progression. Keep in mind that every person is unique in what is found on their tests and procedures, so your results may be similar to mine or different, I do not know. I found that osteopenia, especially since I am premenopausal, seemed a little odd. Because of that, I kind of pushed for a BMB. I had that done just yesterday and the results should be back in two weeks time.
I know you will have a bone scan sometime in the next few months so that should reveal more for you. In the meantime, keep asking questions, it is so good to get good information based on facts!
Toni
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: When do symptoms change a MGUS diagnosis?
Hi Suzanne
I was diagnosed with multiple myeloma in March and have just commenced stem cell harvest this weekend. I had problems with low iron and anaemia which my doc and I both accepted as due to menstrual problems. An xray of my arthritic hip found suspicious bone lesions which led to diagnosis.
Anyway hope this helps you:
Under our NZ health system you are entitled to a second opinion under the Health Practitioners Competency Assurance Act, which means you can arrange to see another GP for a second opinion,
Or
You can ask your GP to refer you to see a haematologist privately. You would need to pay for this and any tests they do in addition to the information provided by your GP, but if they felt it was necessary, you would be taken under the public system at no cost to you.
There is also information that may be useful in the MOH Standards for service provision for myeloma that relate to MGUS (Investigations, Diagnosis and Staging, P16) which may also be of use.
Anyway best of luck and I hope this has helped.
Jen
I was diagnosed with multiple myeloma in March and have just commenced stem cell harvest this weekend. I had problems with low iron and anaemia which my doc and I both accepted as due to menstrual problems. An xray of my arthritic hip found suspicious bone lesions which led to diagnosis.
Anyway hope this helps you:
Under our NZ health system you are entitled to a second opinion under the Health Practitioners Competency Assurance Act, which means you can arrange to see another GP for a second opinion,
Or
You can ask your GP to refer you to see a haematologist privately. You would need to pay for this and any tests they do in addition to the information provided by your GP, but if they felt it was necessary, you would be taken under the public system at no cost to you.
There is also information that may be useful in the MOH Standards for service provision for myeloma that relate to MGUS (Investigations, Diagnosis and Staging, P16) which may also be of use.
Anyway best of luck and I hope this has helped.
Jen
-
NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
12 posts
• Page 1 of 2 • 1, 2