Just had my yearly checkup for MGUS and was told by my new doctor to have a full body, skeletal workup on Tuesday. I had a bone marrow biopsy a year or longer ago. It was beneath the threshold. With what little knowledge I've been able to glean from here, I'm not sure, but I believe I may be looking at a diagnosis of multiple myeloma.
Would someone have the time to look over my statistics and let me know your thoughts? I know you can't tell me. I just need to brainstorm with someone. I've also been experiencing bladder / bowel leakage. Just found out I have bladder prolapse too. Will be seeing a neurosurgeon on Nov. 30. Thanks for any help anyone can provide.
MGUS found in 2013 - 1.4 Seemed pretty stable, so I went for six months visits.
March 2014, my immunoglobulin G, QN, Serum was 1816, with M-Spike 1.4; immunoglobulin A was 47 (low) gammaglobulin was 1.7 (high) ; my RBC was 3.93 (L)
Nov. 2014, immunoglobulin G, 1927 (high); immunoglobulin A 47 (low); M-Spike 1.5; calcium 10.1 (corrected calcium in normal level).
Nov. 2015, immunoglobulin G, 1906 (high); immunoglobulin A 43 (low); M-Spike 1.5; RBC 3.86 (low); MCV 100 (high); RDW10.9 (low); MON% 9.5 (high); EO% 3.1 (high); CO2 31.5 (high); CA 10.2 (high) (corrected calcium normal)
Also, I have severe degenerative disk disease lumbar and cervical, with some spinal cord compression, also severe nerve root compression. Also have cervical spondylosis,
herniated discs, severe stenosis and retrolisthesis at several levels.
Thank you for any help you can give.
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Re: Has my MGUS progressed to multiple myeloma?
Hi Inspirations7,
I am definitely not a doctor and cannot offer you any qualified answers!
But looking at your M-spike, staying around 1.5 from year to year, it seems that you are maybe still in the MGUS category. Did you have any other symptoms and how about the kappa / lambda free light chain ratio?
Unless someone here with medical expertise can help with qualified answers I think you need to get a good communication with your doctor.
The doctor who just took over may just be doing a good job. He/she may just want to make sure that your MGUS is not developing and that you have none of the CRAB symptoms.
Is he/she a MGUS / multiple myeloma specialist or is she in touch with such a specialist? This can turn out to be important for you.
And what kind of scans are they doing? Just ordinary X-ray or also MR and PET with/without contrast injections?
Please ask your doctor to inform you when you are getting the feed back from your scans.
I believe that only your doctor or a specialist with all the information present can give you real valid information.
Best regards
Lev
I am definitely not a doctor and cannot offer you any qualified answers!
But looking at your M-spike, staying around 1.5 from year to year, it seems that you are maybe still in the MGUS category. Did you have any other symptoms and how about the kappa / lambda free light chain ratio?
Unless someone here with medical expertise can help with qualified answers I think you need to get a good communication with your doctor.
The doctor who just took over may just be doing a good job. He/she may just want to make sure that your MGUS is not developing and that you have none of the CRAB symptoms.
Is he/she a MGUS / multiple myeloma specialist or is she in touch with such a specialist? This can turn out to be important for you.
And what kind of scans are they doing? Just ordinary X-ray or also MR and PET with/without contrast injections?
Please ask your doctor to inform you when you are getting the feed back from your scans.
I believe that only your doctor or a specialist with all the information present can give you real valid information.
Best regards
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Has my MGUS progressed to multiple myeloma?
Considering the nerve compression, bladder leakage etc., I think the proposed skeletal survey and visit to neurosurgeon are a good idea to rule out any additional issues in the spinal cord area.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Has my MGUS progressed to multiple myeloma?
Hi Inspirations,
Lev asked some good questions. Your M-spike seems very stable, which is good news. I tend to agree that you are probably still in the MGUS category.
The top 6 things you want to be tracking and go back and compare over time are the:
M-spike
Involved free light chain (this could be either kappa or lambda...it will be the one that is high)
Free light chain ratio
Creatinine from metabolic panel
Calcium from metabolic panel
Hemoglobin from CBC
It would be good to continue keeping an eye on your IgG and IgA. Your IgA is a bit low, signaling that you may be dealing with a phenomenon known as immunoparesis. Folks with immunoparesis should also keep an eye on their platelet levels and signs for anemia (track your hemoglobin level and keep on looking at your RBC level) and kidney function (track your creatinine level).
Were your cytognetics normal when you last had your bone marrow biopsy? It's always good to try and understand where you stand genetically with respect to a monoclonal gammopathy.
Given all your spinal issues, have you had a recent MRI of your spine and was it checked for any multiple myeloma related complications?
The thing that would concern me is that with all your non multiple myeloma related spinal problems, that you may not become aware of any multiple myeloma related complications in your spine since they might be masked by your current spinal issues. It therefore might make sense to get an MRI or a PET/CT at some point just to be sure that no lytic lesions are developing in your spine.
This is a really good article on the pros and cons of using an xray, MRI, CT or PET/CT in patients with monoclonal gammopathies.
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
I'm not a doc, but I'm guessing that your bladder and bowel issues and are due to neurogenic bladder and bowel dysfunction as a result of your current spinal issues. A fix would involve correcting some of the issues with your spine. But again, this is just a guess from a layman and your doc really needs to make this call.
Lev asked some good questions. Your M-spike seems very stable, which is good news. I tend to agree that you are probably still in the MGUS category.
The top 6 things you want to be tracking and go back and compare over time are the:
M-spike
Involved free light chain (this could be either kappa or lambda...it will be the one that is high)
Free light chain ratio
Creatinine from metabolic panel
Calcium from metabolic panel
Hemoglobin from CBC
It would be good to continue keeping an eye on your IgG and IgA. Your IgA is a bit low, signaling that you may be dealing with a phenomenon known as immunoparesis. Folks with immunoparesis should also keep an eye on their platelet levels and signs for anemia (track your hemoglobin level and keep on looking at your RBC level) and kidney function (track your creatinine level).
Were your cytognetics normal when you last had your bone marrow biopsy? It's always good to try and understand where you stand genetically with respect to a monoclonal gammopathy.
Given all your spinal issues, have you had a recent MRI of your spine and was it checked for any multiple myeloma related complications?
The thing that would concern me is that with all your non multiple myeloma related spinal problems, that you may not become aware of any multiple myeloma related complications in your spine since they might be masked by your current spinal issues. It therefore might make sense to get an MRI or a PET/CT at some point just to be sure that no lytic lesions are developing in your spine.
This is a really good article on the pros and cons of using an xray, MRI, CT or PET/CT in patients with monoclonal gammopathies.
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
I'm not a doc, but I'm guessing that your bladder and bowel issues and are due to neurogenic bladder and bowel dysfunction as a result of your current spinal issues. A fix would involve correcting some of the issues with your spine. But again, this is just a guess from a layman and your doc really needs to make this call.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Has my MGUS progressed to multiple myeloma?
Thank you all for answering.
Yes, I have other symptoms, Lev. First, I forgot to tell you I have axonal motor-sensory polyneuropathy too. I am dealing with a lot of confusion. I work from home editing and do a little writing. While I can manage the editing on familiar things, I cannot THINK moment to moment, meaning I can't put things in order. I'm extremely forgetful. For instance, the other day, I was working, had a midmorning snack (as usual), and then totally forgot to eat lunch two days in a row. I can't put things into sequence. (I've been dealing with a little of this, though, for some time.) I'm dizzy, and I go off-balance a fair amount. I even went to an extreme and bought one of those supplements for the brain. Didn't work.
Don't know what the kappa / lambda short chain is.
No, she is not a MGUS / myeloma specialist. They are doing ordinary X-ray, whole body scans. I have recently had MRIs for cervical/lumbar and brain, so I'm taking them with me tomorrow.
Mutilbilly, I am not sure where to find these other six things are on my report. I do know where the M-spike is. I'll see if I can find out though. Not sure what cytogenetics is. No, MRI wasn't checked for multiple myeloma complications. So far, I don't have pain with my lumbar/cervical issues, only off-balance, and my leg totally giving away in March, no feeling at all. And both legs partially giving way, from time to time.
Thank you all, Lev, Little Monkey and Multibilly. It is so good to at least have someone who understands. Could my confusion be from MGUS? The confusion is HUGE. I've been in tears trying to sort through papers on my desk, not knowing what to do with them. Could the polyneuropathy play a part in all of this? Again, thanks.
Yes, I have other symptoms, Lev. First, I forgot to tell you I have axonal motor-sensory polyneuropathy too. I am dealing with a lot of confusion. I work from home editing and do a little writing. While I can manage the editing on familiar things, I cannot THINK moment to moment, meaning I can't put things in order. I'm extremely forgetful. For instance, the other day, I was working, had a midmorning snack (as usual), and then totally forgot to eat lunch two days in a row. I can't put things into sequence. (I've been dealing with a little of this, though, for some time.) I'm dizzy, and I go off-balance a fair amount. I even went to an extreme and bought one of those supplements for the brain. Didn't work.
Don't know what the kappa / lambda short chain is.
No, she is not a MGUS / myeloma specialist. They are doing ordinary X-ray, whole body scans. I have recently had MRIs for cervical/lumbar and brain, so I'm taking them with me tomorrow.
Mutilbilly, I am not sure where to find these other six things are on my report. I do know where the M-spike is. I'll see if I can find out though. Not sure what cytogenetics is. No, MRI wasn't checked for multiple myeloma complications. So far, I don't have pain with my lumbar/cervical issues, only off-balance, and my leg totally giving away in March, no feeling at all. And both legs partially giving way, from time to time.
Thank you all, Lev, Little Monkey and Multibilly. It is so good to at least have someone who understands. Could my confusion be from MGUS? The confusion is HUGE. I've been in tears trying to sort through papers on my desk, not knowing what to do with them. Could the polyneuropathy play a part in all of this? Again, thanks.
Re: Has my MGUS progressed to multiple myeloma?
Hi Inspirations,
Cytogenetics is just a fancy word for chromosome analysis. When you had your bone marrow biopsy done, they almost certainly performed what is known as FISH and chromosome analysis. In the bone marrow biopsy report, they should have summarized any chromosomal mutation findings from the FISH and chromosome tests that might be of concern for folks with monoclonal gammopathies.
However, these reports tend to be very cryptic and extremely hard for a layman to decipher, even when looking at only the summary sections. So it might be good to walk through these sections of the report with your doc.
See this thread to get an idea of the things to be on the lookout for.
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
Cytogenetics is just a fancy word for chromosome analysis. When you had your bone marrow biopsy done, they almost certainly performed what is known as FISH and chromosome analysis. In the bone marrow biopsy report, they should have summarized any chromosomal mutation findings from the FISH and chromosome tests that might be of concern for folks with monoclonal gammopathies.
However, these reports tend to be very cryptic and extremely hard for a layman to decipher, even when looking at only the summary sections. So it might be good to walk through these sections of the report with your doc.
See this thread to get an idea of the things to be on the lookout for.
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Has my MGUS progressed to multiple myeloma?
Thank you so much, Multibilly. I've printed it off to look over. Thank you for your help.
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