Ok, so Monday my neurologist called me to come in immediately. I had had my yearly check up for neuropathy and fibromyalgia. I have had the fibromyalgia for 30 years and the neuropathy about 5. I am not diabetic and all the other blood work was ok, but this MGUS thing was positive.
The neurologist downplayed it and said I should be checked by a hematologist/ oncologist "just in case". I have an appointment, but the more I read, the more terrified I become.
What kind of testing should I expect and exactly how does this progress? Is it ever "nothing"?
Forums
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
Hi Micki,
I was in your shoes 4 years ago. I had a routine visit with my endocrinologist (with blood work) and a few days later got this awful message that I have an M-spike and needed to see an oncologist because it could be MGUS or 'something else.' I understand your concern. The more you read, the more you worry.
What is your M-spike? Are you anemic?
When I visited the oncologist for the first time, she ran more blood tests, a 24 hour urine test, and total body scan. It took weeks for all the tests to come in, and I ended up with MGUS (benign condition with no symptoms). The worst part is waiting.
Now, once a year my internist monitors my blood because annually 1% of the MGUS population progresses to multiple myeloma. MGUS is common with autoimmune diseases too. Honestly, I don't feel any different than I did before the MGUS diagnosis.
Take care, Diane
I was in your shoes 4 years ago. I had a routine visit with my endocrinologist (with blood work) and a few days later got this awful message that I have an M-spike and needed to see an oncologist because it could be MGUS or 'something else.' I understand your concern. The more you read, the more you worry.
What is your M-spike? Are you anemic?
When I visited the oncologist for the first time, she ran more blood tests, a 24 hour urine test, and total body scan. It took weeks for all the tests to come in, and I ended up with MGUS (benign condition with no symptoms). The worst part is waiting.
Now, once a year my internist monitors my blood because annually 1% of the MGUS population progresses to multiple myeloma. MGUS is common with autoimmune diseases too. Honestly, I don't feel any different than I did before the MGUS diagnosis.
Take care, Diane
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DianeM
Re: Just diagnosed with MGUS - what should I expect?
Hi Micki,
I, too, found out I had asymptotic multiple myeloma about a year ago simply by chance. I now go every 3 months to the oncologist for blood work and a 24-hour urine to monitor the disease. I have no symptoms at all and feel great. I did not have a bone marrow biopsy as the oncologist felt it wasn't necessary at this time to put me through the procedure.
My next 3-month appointment is tomorrow. Although I feel great, there is always a little anxiety. Otherwise, I am a healthy 52 year old woman who does not take any medication. My task is keep my immune system strong and healthy by eating right, exercising and taking supplements.
Do not read too much as it is scary and some of the information is outdated.
All the best,
Annie
I, too, found out I had asymptotic multiple myeloma about a year ago simply by chance. I now go every 3 months to the oncologist for blood work and a 24-hour urine to monitor the disease. I have no symptoms at all and feel great. I did not have a bone marrow biopsy as the oncologist felt it wasn't necessary at this time to put me through the procedure.
My next 3-month appointment is tomorrow. Although I feel great, there is always a little anxiety. Otherwise, I am a healthy 52 year old woman who does not take any medication. My task is keep my immune system strong and healthy by eating right, exercising and taking supplements.
Do not read too much as it is scary and some of the information is outdated.
All the best,
Annie
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annie0524
Re: Just diagnosed with MGUS - what should I expect?
Hi Micki,
I agree with Diane that you will at least likely get more blood tests, depending on what tests were already run to determine the suspicion of MGUS. Do you know which tests led your current doc to suspect MGUS?
Between the two docs, they should be running a serum protein electrophoresis (SPEP), immunofixation (IFE), serum free light chain assay, quantified immunoglobulins, CBC blood test and a comprehensive metabolic panel. Depending on the indivdual hematologist's testing preferences, he/she may or not order a 24 hour urine protein electrophoresis (UPEP) test. The major testing labs like Quest and Labcorp turn these lab tests around in 3-4 days, so your hematologist should have them in pretty short order.
Depending on what your current lab tests show going into the appointment, the hematologist may or may not schedule a future whole body MRI or a PET/CT scan and a future bone marrow biopsy (don't settle for an xray survey when first getting diagnosed). The radiologist usually weighs in with a report on the PET/CT or MRI in a day or two and this is something that you would debrief with your hematologist on. The bone marrow biopsy tests can take a little over a week to get back. I have heard stories like Diane's where it takes considerably longer to get various test results back, but that really isn't the norm for most folks and hasn't been my own experience at several institutions over the past three years..
Whether or not this MGUS thing is "nothing" really depends on what tests led your doctor to suspect MGUS and what the values of those markers were. It might be good for you to find out those details from your neurologist if you don't already know what they are.
Like Diane said, keep in mind that even if it is MGUS, the chance of it becoming symptomatic multiple myeloma is only about 1%/year. Most people go through life with MGUS without ever being any the worse for it.
When you see the hematologist, I really suggest you either record the conversation on a smartphone and/or bring in a friend to have an additional set of ears to interpret the conversation. Also, write down all of your questions beforehand. The first couple of meetings with the hematologist can be total information overload and it is easy to not recall everything that was said and/or forget to ask your key questions.
Let us know how things turn out and good luck.
I agree with Diane that you will at least likely get more blood tests, depending on what tests were already run to determine the suspicion of MGUS. Do you know which tests led your current doc to suspect MGUS?
Between the two docs, they should be running a serum protein electrophoresis (SPEP), immunofixation (IFE), serum free light chain assay, quantified immunoglobulins, CBC blood test and a comprehensive metabolic panel. Depending on the indivdual hematologist's testing preferences, he/she may or not order a 24 hour urine protein electrophoresis (UPEP) test. The major testing labs like Quest and Labcorp turn these lab tests around in 3-4 days, so your hematologist should have them in pretty short order.
Depending on what your current lab tests show going into the appointment, the hematologist may or may not schedule a future whole body MRI or a PET/CT scan and a future bone marrow biopsy (don't settle for an xray survey when first getting diagnosed). The radiologist usually weighs in with a report on the PET/CT or MRI in a day or two and this is something that you would debrief with your hematologist on. The bone marrow biopsy tests can take a little over a week to get back. I have heard stories like Diane's where it takes considerably longer to get various test results back, but that really isn't the norm for most folks and hasn't been my own experience at several institutions over the past three years..
Whether or not this MGUS thing is "nothing" really depends on what tests led your doctor to suspect MGUS and what the values of those markers were. It might be good for you to find out those details from your neurologist if you don't already know what they are.
Like Diane said, keep in mind that even if it is MGUS, the chance of it becoming symptomatic multiple myeloma is only about 1%/year. Most people go through life with MGUS without ever being any the worse for it.
When you see the hematologist, I really suggest you either record the conversation on a smartphone and/or bring in a friend to have an additional set of ears to interpret the conversation. Also, write down all of your questions beforehand. The first couple of meetings with the hematologist can be total information overload and it is easy to not recall everything that was said and/or forget to ask your key questions.
Let us know how things turn out and good luck.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS - what should I expect?
Hi and thank you for your replies. Here is where I am at right now.
The hematologist/ oncologist took me in yesterday afternoon. She was very calm and positive, which helped a lot. She asked what I knew about this and I said just what I googled. She said don't google, it is mostly out of date anyway.
My blood work from the neurologist showed "gamma-migrating paraprotein identified". Everything else was in range and that includes all of my blood work. Never anemic, not diabetic, perfect cholesterol, and all those other tests. The albumin was ok. The M-spike said 0.4 g/dL. Is that bad? I do sometimes show a positive ANA, but was never diagnosed with lupus.
She said with this blood work it is not likely to be multiple myeloma but it would be watched and retested every year. She did more blood work, a full body X-ray ( I didn't get to see the part about asking for an MRI or PET scan till last night.) She is also doing the bone marrow biopsy in the hip next week (how bad does that hurt?)
With MGUS, she said most cases do not turn to multiple myeloma. They just monitor it. She sounded so assuring but I am still very scared that this weird thing is in me. I am 67 years old but have an active life and always looked forward to the future. At my age, I guess that was sort of naive, but this thing was like having my own mortality slapping me in the face. Even if these tests come back ok, I think I will feel like I am a walking time bomb waiting to go off. Does that feeling go away?
She has an excellent reputation and works and teaches this at a major New York hospital, so she should know what she is talking about.
What do you think?
The hematologist/ oncologist took me in yesterday afternoon. She was very calm and positive, which helped a lot. She asked what I knew about this and I said just what I googled. She said don't google, it is mostly out of date anyway.
My blood work from the neurologist showed "gamma-migrating paraprotein identified". Everything else was in range and that includes all of my blood work. Never anemic, not diabetic, perfect cholesterol, and all those other tests. The albumin was ok. The M-spike said 0.4 g/dL. Is that bad? I do sometimes show a positive ANA, but was never diagnosed with lupus.
She said with this blood work it is not likely to be multiple myeloma but it would be watched and retested every year. She did more blood work, a full body X-ray ( I didn't get to see the part about asking for an MRI or PET scan till last night.) She is also doing the bone marrow biopsy in the hip next week (how bad does that hurt?)
With MGUS, she said most cases do not turn to multiple myeloma. They just monitor it. She sounded so assuring but I am still very scared that this weird thing is in me. I am 67 years old but have an active life and always looked forward to the future. At my age, I guess that was sort of naive, but this thing was like having my own mortality slapping me in the face. Even if these tests come back ok, I think I will feel like I am a walking time bomb waiting to go off. Does that feeling go away?
She has an excellent reputation and works and teaches this at a major New York hospital, so she should know what she is talking about.
What do you think?
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
Hi Micki,
Sounds like you are in pretty capable hands.
An M-spike of 0.4 g/dL is pretty small and is consistent with early MGUS (which again, only has a 1% / year chance of evolving into multiple myeloma).
The bone marrow biopsy is the golden test for monoclonal gammopathies and will provide the information that is required for an accurate diagnosis. It's also good that your are getting imaged, just to be on the safe side.
My bone marrow biopsy was a breeze and I suffered little discomfort with only only a local anesthetic. But others have varying experiences (see link below). In any case, don't fret about it. It will be over before you know it.
"Bone marrow biopsies: Am I a wuss?" (forum disc. started Dec 13, 2013)
Sounds like you are in pretty capable hands.
An M-spike of 0.4 g/dL is pretty small and is consistent with early MGUS (which again, only has a 1% / year chance of evolving into multiple myeloma).
The bone marrow biopsy is the golden test for monoclonal gammopathies and will provide the information that is required for an accurate diagnosis. It's also good that your are getting imaged, just to be on the safe side.
My bone marrow biopsy was a breeze and I suffered little discomfort with only only a local anesthetic. But others have varying experiences (see link below). In any case, don't fret about it. It will be over before you know it.
"Bone marrow biopsies: Am I a wuss?" (forum disc. started Dec 13, 2013)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS - what should I expect?
Hi Multibilly,
I was so surprised when my doctor called me today! I was at the pediatrician with my grandson. She said she knew how anxious I was about the tests and wanted to let me know both the skeleton test and blood were normal. She put a rush on them and I guess in a hospital it is faster.
BUT she still wants that bone marrow test and, yes, I am in the wuss category. I have spoken to several people and heard such opposite reports I don't know what to think. But I guess I have to do it. I had two kids doing Lamaze breathing; I didn't want pain meds ... and I felt nothing. I guess they give a local for this though. I don't think I remember that breathing after 40 years.
I think the stress of waiting for the results, for me, will be worse the pain. And then holding my breath for the follow ups. I will let you know what happens next week.
Thanks
I was so surprised when my doctor called me today! I was at the pediatrician with my grandson. She said she knew how anxious I was about the tests and wanted to let me know both the skeleton test and blood were normal. She put a rush on them and I guess in a hospital it is faster.
BUT she still wants that bone marrow test and, yes, I am in the wuss category. I have spoken to several people and heard such opposite reports I don't know what to think. But I guess I have to do it. I had two kids doing Lamaze breathing; I didn't want pain meds ... and I felt nothing. I guess they give a local for this though. I don't think I remember that breathing after 40 years.
I think the stress of waiting for the results, for me, will be worse the pain. And then holding my breath for the follow ups. I will let you know what happens next week.
Thanks
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
Good evening,
Just a follow up. I had the bone marrow biopsy this morning. She is sending it to 4 different labs.
Just an FYI for those who fear it: I felt NOTHING and, except for the pinch of the needles for the local, there was no sensation at all. In fact , she said you may feel a little shock-like feeling when I pull it out. I said what do you mean out? She said I am finished! There was a tingle like a sciatic nerve pain, but much milder, for about 3 seconds. Much better than any dental procedure.
Now the waiting for the biopsy report. She repeated all blood work. M spike is still 0.4 and everything else is normal. She did it all but I don't know how to post it on here. So if the biopsy is normal also, where do they go from here?
I have an appointment to discuss everything with her next week when the biopsy comes back. What do I ask? She is calling it MGUS. Is this less likely to turn or does that not matter?
Just a follow up. I had the bone marrow biopsy this morning. She is sending it to 4 different labs.
Just an FYI for those who fear it: I felt NOTHING and, except for the pinch of the needles for the local, there was no sensation at all. In fact , she said you may feel a little shock-like feeling when I pull it out. I said what do you mean out? She said I am finished! There was a tingle like a sciatic nerve pain, but much milder, for about 3 seconds. Much better than any dental procedure.
Now the waiting for the biopsy report. She repeated all blood work. M spike is still 0.4 and everything else is normal. She did it all but I don't know how to post it on here. So if the biopsy is normal also, where do they go from here?
I have an appointment to discuss everything with her next week when the biopsy comes back. What do I ask? She is calling it MGUS. Is this less likely to turn or does that not matter?
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
Hey Micki,
Your BMB experience sounds like mine. Glad it went well for you.
I'm not a doc, but I think the chances that the BMB will yield a bone marrow plasma percentage (BMPC) less than 10% (thereby keeping your diagnosis as MGUS instead of smoldering multiple myeloma) is pretty good given your low M-spike of 0.4 g/dL. Some folks do have a condition called oligosecretory multiple myeloma, where the M-spike doesn't reflect the true disease burden of the patient, and they can have a much higher BMPC with a relatively low M-spike - but this form of multiple myeloma is pretty rare.
I am going to paraphrase part of a response I gave to Mmjakarta on bone marrow biopsy reports to help you better prep for what to expect in the bone marrow biopsy debrief:
Your BMB experience sounds like mine. Glad it went well for you.
I'm not a doc, but I think the chances that the BMB will yield a bone marrow plasma percentage (BMPC) less than 10% (thereby keeping your diagnosis as MGUS instead of smoldering multiple myeloma) is pretty good given your low M-spike of 0.4 g/dL. Some folks do have a condition called oligosecretory multiple myeloma, where the M-spike doesn't reflect the true disease burden of the patient, and they can have a much higher BMPC with a relatively low M-spike - but this form of multiple myeloma is pretty rare.
I am going to paraphrase part of a response I gave to Mmjakarta on bone marrow biopsy reports to help you better prep for what to expect in the bone marrow biopsy debrief:
The bone marrow plasma percentage (BMPC) is probably the most important thing that you will get back on the BMB report. A normal BMPC is less than 5%. Your mom's BMPC will likely be higher if she has multiple myeloma. The report should also tell you if her plasma cells visually appear to be distorted by multiple myeloma and whether she has some of the typical multiple myeloma protein markers on her cell's surfaces via a test called flow cytometry.
The cytogenetic report will only be as good as the probes for which the FISH test is configured for. You can get a good idea of which FISH probes to ask for and which cytogenetic abnormalities are the most concerning by reading through this article:
"Great article - cytogenetics (chromosomal abnormalities)" (forum disc. started Nov 3, 2015)
This Mayo guideline (link) is easier to read and understand and it will also give you a good idea of the major cytogenetic abnormalities to be concerned with.
Lastly, it's really very hard for a non-medical person to figure out just what the BMB results mean when you read through it, even when you know which specific chromosomal abnormalities or protein markers you are trying to find in the report. So be sure to walk through the report with your doctor and have him explain each of the sections of the report and take lots of notes.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS - what should I expect?
I too just had a MGUS diagnosis in August, after six to eight months of having a POEMS diagnosis. The only reason I can figure out the oncologist suggested to be re-diagnosed at Mayo was because he was unsure of himself and how to treat this. My liver, kidneys, and metabolic systems are all compromised now. So, when given Revlimid, I had terrible stomach problems and my hair fell out in handfuls. That's not supposed to happen. He was certain, the modulators would be too strong for me, so he sent me to Mayo, he told me, to have me re-diagnosed for MGUS?
Anyway, was wondering if there are symptoms? I heard that long-term MGUS causes kidney and neuro problems. I've also got some.
Result Ref Range Feb 4 Feb 11 Nov 6 Nov 6
IgA 68-378 mg/dL 98 100 90 94
IgG 768-1632 mg/dL 1300 1250 1360 1197
IgM 60-263 mg/dL 92 93 77
(All dates are from this year - 2015)
Anyway, was wondering if there are symptoms? I heard that long-term MGUS causes kidney and neuro problems. I've also got some.
Result Ref Range Feb 4 Feb 11 Nov 6 Nov 6
IgA 68-378 mg/dL 98 100 90 94
IgG 768-1632 mg/dL 1300 1250 1360 1197
IgM 60-263 mg/dL 92 93 77
(All dates are from this year - 2015)
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