Hi,
I'm new! My name is Cati and I was given the diagnoses of MGUS last year about April / May. My previous PCP seemed really irritated by that diagnosis, like it was a cop out. I am 31. I was diagnosed at 30. Went in because of my weight. I am nearly 6 feet (1.83 m), 290 lbs (132 kg) was my weight). He wanted blood work done. My protein level came back elevated. (It was a while ago; I don't remember the numbers.) So he sent me for more tests. He had me tested for HIV and hep. Said he was ruling out everything. So he sent me to a hematologist.
Well I saw him every three months. No change, then we went to 6 months. I just did my blood work for the 6 months. I am terrified. I have absolutely no symptoms and I know last time he said my organs were working 100%. I really wish he was wrong about MGUS. We lost our insurance due to lay off. I have to pay for the blood work and doc visits out of pocket.
Is it possible that something else could cause the protein elevation? He did tell me one time that he was sure it was my bones. But I have not had any kind of skeletal test or bone marrow. He said he didn't need it. I can pretty much guarantee I am dehydrated. Mildly probably. I hardly drink water. Which I am working on that. I drink soda. And since the lay off, we haven't been eating that well due to lack of money. Also I think I could be suffering from adrenal fatigue.
I see him again on the 23rd for my results. I need to not stress, but I cant help it. I'm terrified I'm going to get a call to go ahead and come in. Am I crazy?
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Re: Am I a worry wort?
Hi CatiK,
Welcome to the forum.
A few thoughts off the top of my head...
You may not know this, but the chance of MGUS progressing to symptomatic multiple myeloma is only about 1%/year. A lot of folks go through life and never even know they have MGUS. So, try not to freak out too much about a diagnosis of MGUS.
Also, if you just lost insurance coverage due to a layoff, that would qualify as a "life event" to get on to Obamacare. And if money is tight, then you might qualify for subsidized Obamacare.
When you see your doc on the 23rd, ask for copies of all your previous and current lab reports and his written diagnosis paperwork (these are legally yours) and feel free to ask questions about them on this forum. Folks on this forum are happy to give you their two cents on what they think about your lab results and what next steps you might take.
If you are going to spend the money on doctor visits and blood tests, you might as well spend those dollars with a top notch multiple myeloma specialist (being a hematologist doesn't necessarily mean that doctor is a multiple myeloma specialist). If you let us know what city you live in, folks on this forum can make some recommendations on where to find multiple myeloma specialists in your area of Texas.
Welcome to the forum.
A few thoughts off the top of my head...
You may not know this, but the chance of MGUS progressing to symptomatic multiple myeloma is only about 1%/year. A lot of folks go through life and never even know they have MGUS. So, try not to freak out too much about a diagnosis of MGUS.
Also, if you just lost insurance coverage due to a layoff, that would qualify as a "life event" to get on to Obamacare. And if money is tight, then you might qualify for subsidized Obamacare.
When you see your doc on the 23rd, ask for copies of all your previous and current lab reports and his written diagnosis paperwork (these are legally yours) and feel free to ask questions about them on this forum. Folks on this forum are happy to give you their two cents on what they think about your lab results and what next steps you might take.
If you are going to spend the money on doctor visits and blood tests, you might as well spend those dollars with a top notch multiple myeloma specialist (being a hematologist doesn't necessarily mean that doctor is a multiple myeloma specialist). If you let us know what city you live in, folks on this forum can make some recommendations on where to find multiple myeloma specialists in your area of Texas.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Am I a worry wort?
I have my original numbers. I will post that. It's what he had sent my PCP. I haven't gotten a copy of the ones since the testing he mentions. If I find them, I will post them. He said nothing had changed other than the liver test came back normal. This would be tests from a little over a year ago.
Doctor : S.M. (Hematologist)
Reason for the visit: Hypergammaglobulinemia
HISTORY OF PRESENT ILLNESS: Ms. K is a 30 year old Caucasian woman who was evaluated for hypergammaglobulinemia at the request of Dr. S.J. (MY LOCAL DOC). Her serum protein electrophoresis in the past showed elevated monoclonal protein. She has been trying to lose some weight and was using phentermine. I have seen her in evaluation at a previous visit and repeated the lab studies.
Her WBC count was 7400, hemoglobin was 14.5, hematocrit is 42.9, and platelets 279,000/ Creatinine was 0.4, potassium was 3.58, GFR more than 60. Quantitative immunoglobulin level was 1477, IgA was 284, IgM was 221. Serum protein electrophoresis showed elevation of gammaglobulin at 1.9 and beta-2 globulin was elevated at 1.4. Monoclonal spike 0.2 g/dL was notes as well. However! immunofixation did not reveal any monoclonal peaks. Her free kappa-lambda light chain ratio was within normal limits as well.
She returns to the clinic today for followup visit. She denies any other complaints. She did not require any recent blood transfusions. She denies any infections nor had any bruising or bleeding sypmtoms.
PAST MEDICAL HISTORY; Denies any hypertension, diabetes, or coronary heart disease.
SOCIAL HISTORY: She denies and smoking or alcohol use.
REVIEW OF SYSTEM: All 10-point review of systems reviewed, negative except as per HOPI
PHYSICAL EXAMINATION:
GENERAL: She is no distress
VITAL SIGNS: BP: 137/89 Heart rate: 89 Respiratory rate: 18 weight is 269.4 lbs
HEENT: No icterus or pallor. NO oropharyngeal lesions noted
NECK: NO JVD, thyromegaly
LUNGS: Clear to auscultation bilaterally
HEART : S1 and S2 heard, regular, no murmurs
ABDOMEN: Soft bowel sounds present. No mass is felt.
EXTREMITIES: All peripheral pulses felt. No edema or calf tenderness.
CNS: Awake, alert, and oriented X3 No focal deficits noted,
MUSCULOSKELETAL: Spine nontender or palpation
LYMPHATICS: No evidence of lymphadenopathy in the neck, axillae. or groin bilaterally
SKIN: no acchymoses or rashes noted.
IMPRESSION:
1 Hypergammaglobulinemia with presence of monoclonal protein, however without any paraprotein on immunofixation
2 Possibly MGUS
3 Obesity
4 History of recent dental infection
5. History of B12 deficiency
PLAN:
1 Ms K has been reassured that her hypergammaglobulin appears to be reactive. However since there is monoconal protein elevation, this may be an early signs of monoclonal gammopathy of unknown significance. Immunofixation so far has been negative and free light chain assay was negative as well. So we will repeat paraproteinemia workup in 3 months time. She currently does not have any evidence of end-organ damage and we would reevaluate her again in three months.
2 We will also check 24 hour urine protein electophoresis and immunofixation. I have asked her to return to the clinic in three months.
3. She is currently on B12 over the counter. Since she continues to have some fatigue , we will recheck her B12 and folate levels today and if depleted she may need either parenteral therapy or subinguinal supplementation at prescription dosage.
Vital signs:
Height: 72 in weight 269.4 BO 137/89 pulse 89 bpm respiration 18 rpm Temp 97.4 02 Sat 94% at rest, BMI 36.57 Obesity Class 2
LAB
Glucose 88.2
BUN 10.6
Creatinine 0.9
BUN / Creatinine Ratio 11.8
Sodium 143.4
Potassium 3.06
Chloride 104.0
CO2 29.1
Calcium 8.9
Albumin 4.30
Total Protein 8.6
Globulin 4.3
A/G ratio 1.0
Bilirubin 0.71
Alkaline phosphatase 76.8
SGOT/AST 27.4
SGPT/ALT 55.0
GFR Non African American >60
GFR African American >60
Anemia Labs B12 898 Folate serum 13.1 (MY B!2 level was 325 before this test)
Doctor : S.M. (Hematologist)
Reason for the visit: Hypergammaglobulinemia
HISTORY OF PRESENT ILLNESS: Ms. K is a 30 year old Caucasian woman who was evaluated for hypergammaglobulinemia at the request of Dr. S.J. (MY LOCAL DOC). Her serum protein electrophoresis in the past showed elevated monoclonal protein. She has been trying to lose some weight and was using phentermine. I have seen her in evaluation at a previous visit and repeated the lab studies.
Her WBC count was 7400, hemoglobin was 14.5, hematocrit is 42.9, and platelets 279,000/ Creatinine was 0.4, potassium was 3.58, GFR more than 60. Quantitative immunoglobulin level was 1477, IgA was 284, IgM was 221. Serum protein electrophoresis showed elevation of gammaglobulin at 1.9 and beta-2 globulin was elevated at 1.4. Monoclonal spike 0.2 g/dL was notes as well. However! immunofixation did not reveal any monoclonal peaks. Her free kappa-lambda light chain ratio was within normal limits as well.
She returns to the clinic today for followup visit. She denies any other complaints. She did not require any recent blood transfusions. She denies any infections nor had any bruising or bleeding sypmtoms.
PAST MEDICAL HISTORY; Denies any hypertension, diabetes, or coronary heart disease.
SOCIAL HISTORY: She denies and smoking or alcohol use.
REVIEW OF SYSTEM: All 10-point review of systems reviewed, negative except as per HOPI
PHYSICAL EXAMINATION:
GENERAL: She is no distress
VITAL SIGNS: BP: 137/89 Heart rate: 89 Respiratory rate: 18 weight is 269.4 lbs
HEENT: No icterus or pallor. NO oropharyngeal lesions noted
NECK: NO JVD, thyromegaly
LUNGS: Clear to auscultation bilaterally
HEART : S1 and S2 heard, regular, no murmurs
ABDOMEN: Soft bowel sounds present. No mass is felt.
EXTREMITIES: All peripheral pulses felt. No edema or calf tenderness.
CNS: Awake, alert, and oriented X3 No focal deficits noted,
MUSCULOSKELETAL: Spine nontender or palpation
LYMPHATICS: No evidence of lymphadenopathy in the neck, axillae. or groin bilaterally
SKIN: no acchymoses or rashes noted.
IMPRESSION:
1 Hypergammaglobulinemia with presence of monoclonal protein, however without any paraprotein on immunofixation
2 Possibly MGUS
3 Obesity
4 History of recent dental infection
5. History of B12 deficiency
PLAN:
1 Ms K has been reassured that her hypergammaglobulin appears to be reactive. However since there is monoconal protein elevation, this may be an early signs of monoclonal gammopathy of unknown significance. Immunofixation so far has been negative and free light chain assay was negative as well. So we will repeat paraproteinemia workup in 3 months time. She currently does not have any evidence of end-organ damage and we would reevaluate her again in three months.
2 We will also check 24 hour urine protein electophoresis and immunofixation. I have asked her to return to the clinic in three months.
3. She is currently on B12 over the counter. Since she continues to have some fatigue , we will recheck her B12 and folate levels today and if depleted she may need either parenteral therapy or subinguinal supplementation at prescription dosage.
Vital signs:
Height: 72 in weight 269.4 BO 137/89 pulse 89 bpm respiration 18 rpm Temp 97.4 02 Sat 94% at rest, BMI 36.57 Obesity Class 2
LAB
Glucose 88.2
BUN 10.6
Creatinine 0.9
BUN / Creatinine Ratio 11.8
Sodium 143.4
Potassium 3.06
Chloride 104.0
CO2 29.1
Calcium 8.9
Albumin 4.30
Total Protein 8.6
Globulin 4.3
A/G ratio 1.0
Bilirubin 0.71
Alkaline phosphatase 76.8
SGOT/AST 27.4
SGPT/ALT 55.0
GFR Non African American >60
GFR African American >60
Anemia Labs B12 898 Folate serum 13.1 (MY B!2 level was 325 before this test)
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CatiK - Name: Cati
- When were you/they diagnosed?: 2014
- Age at diagnosis: 30
Re: Am I a worry wort?
Thanks for the info on Obamacare. Just looked it up. We didn't qualify. It's been over 60 days. I didn't know we could apply or we would have. 
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CatiK - Name: Cati
- When were you/they diagnosed?: 2014
- Age at diagnosis: 30
Re: Am I a worry wort?
Your multiple myeloma related numbers are ones that most anybody on this forum would love to have.
An M-spike of 0.2 g/dL is tiny and your immunofixation doesn't even show any monoclonal peaks (immunofixation tests tend to be more accurate at detecting the presence of monoclonal protein than serum protein electrophoresis). And your free light chain values are also normal. So, I can see why the doctor is saying that it may only be a "possibility" of MGUS.
Your creatinine and calcium levels are also normal. You may want to dig up your hemogloblin (Hgb) number as well from your CBC test and keep an eye on that level as well. One or more of these markers may go south if you were to develop symptomatic multiple myeloma.
Obamacare open enrollment starts in the fall, so you could be covered by the time you need your next round of testing. I also wouldn't be surprised if your doctor suggested going to annual testing for MGUS monitoring purposes instead of bi-annual testing.
Taking care of your weight and drinking more water would be a friendly thing to do for your body and to help lessen your chances of developing any other health problems down the road
Again, try not to freak out. If this is MGUS, it is an incredibly mild version and may never develop into anything to worry about.
Let us know how your next round of testing turns out....
An M-spike of 0.2 g/dL is tiny and your immunofixation doesn't even show any monoclonal peaks (immunofixation tests tend to be more accurate at detecting the presence of monoclonal protein than serum protein electrophoresis). And your free light chain values are also normal. So, I can see why the doctor is saying that it may only be a "possibility" of MGUS.
Your creatinine and calcium levels are also normal. You may want to dig up your hemogloblin (Hgb) number as well from your CBC test and keep an eye on that level as well. One or more of these markers may go south if you were to develop symptomatic multiple myeloma.
Obamacare open enrollment starts in the fall, so you could be covered by the time you need your next round of testing. I also wouldn't be surprised if your doctor suggested going to annual testing for MGUS monitoring purposes instead of bi-annual testing.
Taking care of your weight and drinking more water would be a friendly thing to do for your body and to help lessen your chances of developing any other health problems down the road
Again, try not to freak out. If this is MGUS, it is an incredibly mild version and may never develop into anything to worry about.
Let us know how your next round of testing turns out....
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Am I a worry wort?
So, after 2 very long weeks of waiting for results, I went in today. When the doctor walked in the room, I said please give me some good news. He told me he had great news!
"We cannot find the protein," with a big smile.
They can't find it!! My IgG is well in normal range, as are the others. Everything was in normal range, aside from a couple of things I need to work on.
He said maybe I had an infection or something that was making it flare up, and now it's not there. There was no M protein? Isn't that the M-spike? It wasn't there. Everything came back negative.
I am so excited. Not too excited, as he said it can flare back up later on in life.
I'll be doing the skeletal survey this week. He said I'll do that every year from now on and get my yearly blood work. Not to worry about anything. My organs are working 100%.
"We cannot find the protein," with a big smile.
They can't find it!! My IgG is well in normal range, as are the others. Everything was in normal range, aside from a couple of things I need to work on.
He said maybe I had an infection or something that was making it flare up, and now it's not there. There was no M protein? Isn't that the M-spike? It wasn't there. Everything came back negative.
I am so excited. Not too excited, as he said it can flare back up later on in life. I'll be doing the skeletal survey this week. He said I'll do that every year from now on
and get my yearly blood work. Not to worry about anything. My organs are working 100%.-
CatiK - Name: Cati
- When were you/they diagnosed?: 2014
- Age at diagnosis: 30
6 posts
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