I'm a 42 year old male and about a month ago, while I was in an all-day training for work, my legs and arms started twitching like crazy. After a few days of this, my muscles were getting stiff to the point I was walking differently and on occasion I would experience cramping and a slight head fog. More recently, I starting to feel random pains that feel like its coming from my bones or joints.
During this time, I was referred to a neurologist. She ordered some blood work which, for the most part, was normal with the exception of this..
Protein Electrophoresis w/ Reflex Immunofixation, Serum
Component Standard Range Your Value
Total Protein Serum 6.1 - 8.1 g/dL 7.9
Albumin 3.8 - 4.8 g/dL 4.7
Alpha 1 Globulin 0.2 - 0.3 g/dL 0.3
Alpha 2 Globulin 0.5 - 0.9 g/dL 0.7
Beta 1 Globulin Serum 0.4 - 0.6 g/dL 0.50
Beta 2 Globulin Serum 0.2 - 0.5 g/dL 0.40
Gamma Globulin 0.8 - 1.7 g/dL 1.3
Abnormal Protein Band 1 Serum: None Detected g/dL; see below.
Prot. Electro Interp:
Possible monoclonal protein (M-protein) present.
Suggest serum immunofixation.
Immunofixation Interpretation (S)
Faint IgM lambda monoclonal band with strong polyclonal background,
consistent with monoclonal gammopathy of undetermined origin (MGUS).
Suggest repeating immunofixation in six months.
One other thing to note is my primary care mentioned an elevated creatine kinase, muscle enzyme (CKM) but said its been that way for years. My neurologist referred me to a hematologist, who I have yet to meet with, but my brain simply cannot wait.. My legs are twitching so much at times I can't sit still.
Can anyone please help me understand whats happening and what to do from here?
Thank you,
Jim
Forums
Re: Are symptoms and test results consistent with MGUS?
Doubledj1,
FIrst off, I'm not a doc and your hematologist is best suited to answer all these questions. I'm just giving you a few things to consider talking about with the hematologist when you see him/her. I'm also not suggesting that any of the diseases I mention below are likely at play, but they should be ruled out.
When you say your creatinine is elevated, what level is at? Are your BUN (another kidney function marker in addition to creatinine and albumin), hemoglobin and calcium levels normal? These are all items that you should be looking at when considering MGUS.
The immunofixation test (IFE) detects the presence of monoclonal proteins and the serum protein electrophoresis test (SPEP) measures the amounts of monoclonal immunoglobulins (IgG, IgA, IgM, etc) in your blood. The IFE is a pretty sensitive test. But apparently, there was so little monoclonal IgM in your blood that the SPEP couldn't quantify any monoclonal IgM, or the IFE test simply gave a false reading and MGUS is not in play at all. Since the IFE only showed a faint band to begin with, it is plausible that it is just a false reading. That's why the lab likely suggested getting re-tested in 6 months.
Another possibility is that this could be what is known as light chain MGUS, where the SPEP doesn't register any monoclonal immunoglobulins and a different kind of protein known as a free light chain is the exclusive monoclonal protein that shows up in one's blood.
There are also a couple of other diseases associated with monoclonal IgM that includes Waldenstrom's Macroglobulinemia (WM) and amyloidosis and these should be ruled out or at least discussed with the hematologist.
When you see the hematologist, I would suggest discussing a few additional tests such as a quantified immunoglobulin test and a serum free light chain assay, etc, to start to rule out all the various disease variations associated with monoclonal IgM (light chain MGUS, IgM MGUS, amyloidosis, WM, etc). The hematologist might simply recommend getting re-tested in 3-6 months (or sooner) and including some of these additional tests I've mentioned.
Note that even if it is some form of MGUS, the probability of MGUS progressing to symptomatic multiple myeloma is something on the order of 1%/year. Most people that have MGUS go through life none the worse for it and don't even know they have it.
It's going to be impossible to really comment much further without having some additional tests and/or input from your hematologist. But I hope this gets you better prepped to meet with the hematologist.
FIrst off, I'm not a doc and your hematologist is best suited to answer all these questions. I'm just giving you a few things to consider talking about with the hematologist when you see him/her. I'm also not suggesting that any of the diseases I mention below are likely at play, but they should be ruled out.
When you say your creatinine is elevated, what level is at? Are your BUN (another kidney function marker in addition to creatinine and albumin), hemoglobin and calcium levels normal? These are all items that you should be looking at when considering MGUS.
The immunofixation test (IFE) detects the presence of monoclonal proteins and the serum protein electrophoresis test (SPEP) measures the amounts of monoclonal immunoglobulins (IgG, IgA, IgM, etc) in your blood. The IFE is a pretty sensitive test. But apparently, there was so little monoclonal IgM in your blood that the SPEP couldn't quantify any monoclonal IgM, or the IFE test simply gave a false reading and MGUS is not in play at all. Since the IFE only showed a faint band to begin with, it is plausible that it is just a false reading. That's why the lab likely suggested getting re-tested in 6 months.
Another possibility is that this could be what is known as light chain MGUS, where the SPEP doesn't register any monoclonal immunoglobulins and a different kind of protein known as a free light chain is the exclusive monoclonal protein that shows up in one's blood.
There are also a couple of other diseases associated with monoclonal IgM that includes Waldenstrom's Macroglobulinemia (WM) and amyloidosis and these should be ruled out or at least discussed with the hematologist.
When you see the hematologist, I would suggest discussing a few additional tests such as a quantified immunoglobulin test and a serum free light chain assay, etc, to start to rule out all the various disease variations associated with monoclonal IgM (light chain MGUS, IgM MGUS, amyloidosis, WM, etc). The hematologist might simply recommend getting re-tested in 3-6 months (or sooner) and including some of these additional tests I've mentioned.
Note that even if it is some form of MGUS, the probability of MGUS progressing to symptomatic multiple myeloma is something on the order of 1%/year. Most people that have MGUS go through life none the worse for it and don't even know they have it.
It's going to be impossible to really comment much further without having some additional tests and/or input from your hematologist. But I hope this gets you better prepped to meet with the hematologist.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Are symptoms and test results consistent with MGUS?
Huge thanks for the reply, Multibilly,
I don't have access to the detailed CK results, but I will ask my doctor tomorrow. As for the other tests, all I can see online for those tests is below, and creatinine and BUN are not up to date. I believe they are all within normal range, but creatinine shows increase over time, and calcium decreased a lot in 8 days.
Creatinine
No new test results to date
Nov 17, 2014 1.06
Nov 30, 2013 1.00
May 28, 2008 0.93
BUN
No new test results to date
Nov 30, 2013 11
May 28, 2008 16
Calcium
Aug 13, 2015 8.9
Aug 05, 2015 9.7
Nov 30, 2013 9.5
I didn't get a call back from the hematologist, even after calling twice. They said she would review my blood work and schedule based on how urgent she thinks it is, but right now she's booking into the end of September.
I waited 2 weeks to see my primary for the initial muscle twitching, stiffness, bone pain and head fog. Another 30 days to see the neuro, who spent 10 minutes with me, ordered more labs, and referred me to a hematologist who is booking out another 45 days.
I don't think people understand what it's like to deal with these symptoms 24/7 not knowing if its serious or if I'm dying. These twitches are all over my body, but mostly in my legs. I'm feeling random bone pains and slight weakness – more so after doing something strenuous. I am (was) a cyclist and the last time I tried to ride the recovery after a short casual ride was so bad I could hardly stand the next two days.
Also "head fog," but not even sure if that best describes it (occasionally the back of my head feels like its under pressure and overall feel somewhat light headed). My body (spine mostly) at times feels hot, and lastly I occasionally have trouble following a conversation. I'm sure there is a level of stress-related anxiety that goes with this, but I would REALLY like to know if any of these physical/mental symptoms are at all related to MGUS?
I will make sure to request the lab tests you mentioned and will post more when I finally meet with and hematologist
J
I don't have access to the detailed CK results, but I will ask my doctor tomorrow. As for the other tests, all I can see online for those tests is below, and creatinine and BUN are not up to date. I believe they are all within normal range, but creatinine shows increase over time, and calcium decreased a lot in 8 days.
Creatinine
No new test results to date
Nov 17, 2014 1.06
Nov 30, 2013 1.00
May 28, 2008 0.93
BUN
No new test results to date
Nov 30, 2013 11
May 28, 2008 16
Calcium
Aug 13, 2015 8.9
Aug 05, 2015 9.7
Nov 30, 2013 9.5
I didn't get a call back from the hematologist, even after calling twice. They said she would review my blood work and schedule based on how urgent she thinks it is, but right now she's booking into the end of September.
I waited 2 weeks to see my primary for the initial muscle twitching, stiffness, bone pain and head fog. Another 30 days to see the neuro, who spent 10 minutes with me, ordered more labs, and referred me to a hematologist who is booking out another 45 days.
I don't think people understand what it's like to deal with these symptoms 24/7 not knowing if its serious or if I'm dying. These twitches are all over my body, but mostly in my legs. I'm feeling random bone pains and slight weakness – more so after doing something strenuous. I am (was) a cyclist and the last time I tried to ride the recovery after a short casual ride was so bad I could hardly stand the next two days.
Also "head fog," but not even sure if that best describes it (occasionally the back of my head feels like its under pressure and overall feel somewhat light headed). My body (spine mostly) at times feels hot, and lastly I occasionally have trouble following a conversation. I'm sure there is a level of stress-related anxiety that goes with this, but I would REALLY like to know if any of these physical/mental symptoms are at all related to MGUS?
I will make sure to request the lab tests you mentioned and will post more when I finally meet with and hematologist
J
Re: Are symptoms and test results consistent with MGUS?
I received the results from urine test that was done last week. It was not a 24 hour test.
Kappa / Lambda Light Chains, Free w/ Ratio Random Urine
Test Standard Range Your Result
Kappa Light Chain Free (UR) 1.35 - 24.19 mg/L 2.53
Lambda Light Chain, Free (UR) 0.24 - 6.66 mg/L 0.28
Kappa/Lambda Light Chains Free, Ratio (UR) 2.04 - 10.37 9.04
The initial blood work that revealed the potential M-protein, this urine test along with blood work that only checked for calcium, is the only additional tests the neuro ordered before referring me to a hematologist. The hematologist's office called today and said they reviewed all my lab work and it only qualifies for a consult and wanted to schedule me for the end of September (over a month away). She didn't even suggest any additional blood work or tests to be done prior to that meeting.
Am I over thinking this? As I mentioned earlier, the physical symptoms are real and not going away. I just want to make sure I'm heading in the right direction with my current care or if I should be making a change.
J
Kappa / Lambda Light Chains, Free w/ Ratio Random Urine
Test Standard Range Your Result
Kappa Light Chain Free (UR) 1.35 - 24.19 mg/L 2.53
Lambda Light Chain, Free (UR) 0.24 - 6.66 mg/L 0.28
Kappa/Lambda Light Chains Free, Ratio (UR) 2.04 - 10.37 9.04
The initial blood work that revealed the potential M-protein, this urine test along with blood work that only checked for calcium, is the only additional tests the neuro ordered before referring me to a hematologist. The hematologist's office called today and said they reviewed all my lab work and it only qualifies for a consult and wanted to schedule me for the end of September (over a month away). She didn't even suggest any additional blood work or tests to be done prior to that meeting.
Am I over thinking this? As I mentioned earlier, the physical symptoms are real and not going away. I just want to make sure I'm heading in the right direction with my current care or if I should be making a change.
J
Re: Are symptoms and test results consistent with MGUS?
Doubledj1,
A random urine sample test isn't that useful in diagnosing multiple myeloma. You really need a 24-hour urine test when it comes to urine tests and multiple myeloma.
When you post your lab results, it's good to also post the standard reference ranges. But assuming a standard reference range of about 0.7-1.33 mg/dL for creatinine, your previous creatinine levels don't seem worrisome at all and do not indicate any kidney damage. Your calcium and BUN levels also seem to be within a normal range.
I don't think it would be unreasonable to ask the hematologist to run some of the tests I previously suggested. If she's not open to this and you feel like you aren't getting the appropriate attention (you do sound understandably frustrated), then I might suggest re-scheduling with a multiple myeloma specialist (assuming you can do this with your insurance) so that you can put this part of your journey to rest and/or get some sort of diagnosis. A multiple myeloma specialist is not only a hematologist, but also has a lot of experience with monoclonal gammopathies.
If you let us know what city you are in, folks on this forum can make some recommendations as to where to find these specific hematologists.
A random urine sample test isn't that useful in diagnosing multiple myeloma. You really need a 24-hour urine test when it comes to urine tests and multiple myeloma.
When you post your lab results, it's good to also post the standard reference ranges. But assuming a standard reference range of about 0.7-1.33 mg/dL for creatinine, your previous creatinine levels don't seem worrisome at all and do not indicate any kidney damage. Your calcium and BUN levels also seem to be within a normal range.
I don't think it would be unreasonable to ask the hematologist to run some of the tests I previously suggested. If she's not open to this and you feel like you aren't getting the appropriate attention (you do sound understandably frustrated), then I might suggest re-scheduling with a multiple myeloma specialist (assuming you can do this with your insurance) so that you can put this part of your journey to rest and/or get some sort of diagnosis. A multiple myeloma specialist is not only a hematologist, but also has a lot of experience with monoclonal gammopathies.
If you let us know what city you are in, folks on this forum can make some recommendations as to where to find these specific hematologists.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Are symptoms and test results consistent with MGUS?
Again thanks Multibilly. I will make sure I add the standard ranges with labs. I'm from the Boston, Massachusetts area and I believe I have health insurance that most places will take. I would really like someone to comment on a good doctor in the Boston area that specializes in MGUS / multiple myeloma.
My current symptoms are:
* Muscle twitches (lower legs, sometimes upper and random)
* Some cramping if I flex leg muscles
* Random pains (feels like joints or bones)
* As of this morning, I've lost 5 lbs (2 kg) in last week
* Back pain (middle back spine)
* Haven't had the head fog in 2 days, which is good
Prior to the training I mentioned in my original post, I had no symptoms at all.
As for the hematologists. I asked about having some specific tests done while waiting for the consult. The assistant said doctor didn't request any, so it's not necessary at the moment. I politely said I'm going some place else. She actually sounded happy to hear me say that.
I am a current patient at Dana Farber for melanoma. (Gone since 2009.) I just go every 6 months for checkups. I checked and they do have a multiple myeloma team, but I'm not sure if they would see me without a diagnosis. Figured I could leverage already being a patent to have a consult with the myeloma team. At this point, I have a message in to that team and am waiting to hear back .
J
My current symptoms are:
* Muscle twitches (lower legs, sometimes upper and random)
* Some cramping if I flex leg muscles
* Random pains (feels like joints or bones)
* As of this morning, I've lost 5 lbs (2 kg) in last week
* Back pain (middle back spine)
* Haven't had the head fog in 2 days, which is good
Prior to the training I mentioned in my original post, I had no symptoms at all.
As for the hematologists. I asked about having some specific tests done while waiting for the consult. The assistant said doctor didn't request any, so it's not necessary at the moment. I politely said I'm going some place else. She actually sounded happy to hear me say that.
I am a current patient at Dana Farber for melanoma. (Gone since 2009.) I just go every 6 months for checkups. I checked and they do have a multiple myeloma team, but I'm not sure if they would see me without a diagnosis. Figured I could leverage already being a patent to have a consult with the myeloma team. At this point, I have a message in to that team and am waiting to hear back .
J
Re: Are symptoms and test results consistent with MGUS?
Boston is probably one of the best cities in the world when it comes to having access to top multiple myeloma specialists. Dana Farber in particular has some of the very best myeloma specialists, so that seems like a natural place to start since you are already a patient there. If you run into a dead end as far as getting a consult there (I bet you won't have a problem), Dr. Noopur Raje at Mass General is also a top multiple myeloma specialist.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Are symptoms and test results consistent with MGUS?
Thanks again. Looks like I have been assigned to a hematologist at Dana Farber. Just waiting for scheduling, but I will keep Dr. Noopur Raje's info at Mass General in case something changes. The person on the phone said she will review my labs, order additional tests prior to our meeting (was well versed in the tests Multibilly mentioned in earlier post), and potentially request bone marrow biopsy to be done at time of the initial consult. I now feel at least like I'm headed in the right direction. Will circle back when I get more info.
Really glad I found this site and grateful for your replies.
J
Really glad I found this site and grateful for your replies.
J
Re: Are symptoms and test results consistent with MGUS?
OK I got my test results from Dana Farber and would like some feedback as I have not heard back from the dr.
Its long so please bare with me.. I will point out whats high, low, or borderline
SPEP panel with immunofixation
Total Protein 6.4 - 8.3 g/dl = 7.5
IgA 70 - 400 mg/dl = 281
IgG 700 - 1600 mg/dl = 1067
IgM 40 - 230 mg/dl = 248 <==========High
Free Light Chains (serum)
Kappa FLC 3.3 - 19.4 mg/l = 10.8
Lambda Free Light Chains 5.7 - 26.3 mg/L = 10.2
Free Kappa/Lamda Ratio 0.26 - 1.65 = 1.06
B2 microglobulin 0.0 - 2.7 mg/L = 1.5
LDH 107 - 231 U/L = 138
COMPREHENSIVE METABOLIC PANEL
Sodium 135 - 145 mmol/L = 136
Potassium 3.5 - 5.0 mmol/L = 4.8
Chloride 98 - 108 mmol/L 101
Carbon Dioxide 23 - 32 mmol/L = 30
BUN 9 - 25 mg/dL = 12
Creatinine 0.7 - 1.3 mg/dL = 0.97
Glucose 70 - 100 mg/dL = 101 <======== High
Albumin 3.7 - 5.4 g/dL = 4.7
Total Protein 6.0 - 8.0 g/dL = 7.9 <========BL High
Calcium 8.8 - 10.5 mg/dL = 9.9
Alk Phos 36 - 118 U/L = 66
Bilirubin (Total) 0.2 - 1.2 mg/dL = 0.7
AST (SGOT) 9 - 30 U/L = 15
ALT (SGPT) (U/L) 7 - 52 U/L = 21
Globulin 2.3 - 4.2 g/dL = 3.2
GFR (estimated) = >60
Abnormal if <60 mL/min/1.73m2. If patient is African-American, multiply the result by 1.21.
Anion Gap 5
will continue in the next post
Its long so please bare with me.. I will point out whats high, low, or borderline
SPEP panel with immunofixation
Total Protein 6.4 - 8.3 g/dl = 7.5
IgA 70 - 400 mg/dl = 281
IgG 700 - 1600 mg/dl = 1067
IgM 40 - 230 mg/dl = 248 <==========High
Free Light Chains (serum)
Kappa FLC 3.3 - 19.4 mg/l = 10.8
Lambda Free Light Chains 5.7 - 26.3 mg/L = 10.2
Free Kappa/Lamda Ratio 0.26 - 1.65 = 1.06
B2 microglobulin 0.0 - 2.7 mg/L = 1.5
LDH 107 - 231 U/L = 138
COMPREHENSIVE METABOLIC PANEL
Sodium 135 - 145 mmol/L = 136
Potassium 3.5 - 5.0 mmol/L = 4.8
Chloride 98 - 108 mmol/L 101
Carbon Dioxide 23 - 32 mmol/L = 30
BUN 9 - 25 mg/dL = 12
Creatinine 0.7 - 1.3 mg/dL = 0.97
Glucose 70 - 100 mg/dL = 101 <======== High
Albumin 3.7 - 5.4 g/dL = 4.7
Total Protein 6.0 - 8.0 g/dL = 7.9 <========BL High
Calcium 8.8 - 10.5 mg/dL = 9.9
Alk Phos 36 - 118 U/L = 66
Bilirubin (Total) 0.2 - 1.2 mg/dL = 0.7
AST (SGOT) 9 - 30 U/L = 15
ALT (SGPT) (U/L) 7 - 52 U/L = 21
Globulin 2.3 - 4.2 g/dL = 3.2
GFR (estimated) = >60
Abnormal if <60 mL/min/1.73m2. If patient is African-American, multiply the result by 1.21.
Anion Gap 5
will continue in the next post
Re: Are symptoms and test results consistent with MGUS?
Tests continued..
CBC AND DIFFERENTIAL
WBC 3.81 - 8.94 K/uL = 5.98
RBC 4.35 - 5.61 M/uL = 5.39
Hgb 12.5 - 16.3 g/dL = 15.3
HCT 37.1 - 49.5 % = 47.0
PLT 152 - 440 K/uL = 254
MCV 79.0 - 97.0 fL = 87.1
MCH 26.2 - 32.0 pg = 28.3
MCHC 33.3 - 35.7 g/dL = 32.5
RDW 12.1 - 16.0 % = 12.9
MPV 7.0 - 10.8 fl = 9.2
NRBC% (auto) 0.00 /100 WBCs = 0.00
NRBC#, auto Not Reported
Neutrophils 46.5 - 82.4 % = 53.0
Lymphs 8.5 - 32.7 % = 32.9 <=========== High
Monos 5.4 - 14.2 % = 11.4
Eos 0.1 - 6.0 % = 2.0
Basos 0.1 - 1.1 % = 0.7
Neutrophil # 2.23 - 6.11 K/uL = 3.17
Lymph# 0.21 - 2.74 K/uL = 1.97
Mono# 0.2 - 0.87 K/uL = 0.68
Eos# 0.00 - 0.52 K/uL = 0.12
Baso# 0 - 0.11 K/uL = 0.04
ok that covers it
CBC AND DIFFERENTIAL
WBC 3.81 - 8.94 K/uL = 5.98
RBC 4.35 - 5.61 M/uL = 5.39
Hgb 12.5 - 16.3 g/dL = 15.3
HCT 37.1 - 49.5 % = 47.0
PLT 152 - 440 K/uL = 254
MCV 79.0 - 97.0 fL = 87.1
MCH 26.2 - 32.0 pg = 28.3
MCHC 33.3 - 35.7 g/dL = 32.5
RDW 12.1 - 16.0 % = 12.9
MPV 7.0 - 10.8 fl = 9.2
NRBC% (auto) 0.00 /100 WBCs = 0.00
NRBC#, auto Not Reported
Neutrophils 46.5 - 82.4 % = 53.0
Lymphs 8.5 - 32.7 % = 32.9 <=========== High
Monos 5.4 - 14.2 % = 11.4
Eos 0.1 - 6.0 % = 2.0
Basos 0.1 - 1.1 % = 0.7
Neutrophil # 2.23 - 6.11 K/uL = 3.17
Lymph# 0.21 - 2.74 K/uL = 1.97
Mono# 0.2 - 0.87 K/uL = 0.68
Eos# 0.00 - 0.52 K/uL = 0.12
Baso# 0 - 0.11 K/uL = 0.04
ok that covers it
12 posts
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