New member here who was diagnosed with probable MGUS in April 2016. I say probable because my IgG kappa M-spike was low (0.5 g/dL, or 5 g/l) and even lower on three month follow up (0.3). My hematologist said there was no reason to do a skeletal survey or a bone marrow biopsy with my numbers unless things changed. All my remaining labs are normal except for my free light chain ratio, which is slightly elevated but steady at about 2.7 (~22/8). My immunoglobulins are also steady and normal as well.
The only reason I got a serum protein electrophoresis (SPEP) is because I was having vague abdominal pain after three surgeries in the last year (appendix, gallbladder, and hernia). Turns out I have an abdominal wall neuroma (very painful), but for the non-medical, nothing was wrong IN my belly it was just nerve pain from the wall.
To make a long story short, my GP ordered a slew of tests to try to explain the abdominal pain before we diagnosed it as the abdominal wall nerve pain, and of course that's when the M-spike was discovered. I remember my GP saying when ordering these tests, "You have to be prepared to get 1 or 2 results that you don't want to see; they could be false positives, or they could be real."
It was very prophetic. Talk about regret about having these tests done.
I know it's a bit macabre, but I'm curious how others found out about their MGUS "by accident".
That is my intro to the forum as this is my first post and I looking forward to getting to know you all. I've been reading for a while and finally decided to register.
Regards,
Eric
Forums
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Entropy - Who do you know with myeloma?: Me (MGUS)
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 48
Re: Accidental MGUS
Hi,
We are at the same age, and same problem, I also found out about my M protein by an accident. My GP is very smart, and I only asked why my total protein is in a high border (7.9), and he said let me run more test, and that's how we found out about my M protein, which is much higher than yours (1.3 g/dl = 13 g/l)!
I went through all testing, even a bone marrow biopsy. My myeloma specialists says that I have IgG low risk MGUS. All my other tests are ok, even my ratio, and my specialist wants to see me every 3 months, then every 6 months.
I can't tell you what I went through in the last 4 months since my diagnosis, but now I am happy and content. It could be much worse than this. So be happy your m protein is really low, concentrate on having a healthy diet, add some turmeric in your food or even take curcumin supplement, and enjoy your life
We are at the same age, and same problem, I also found out about my M protein by an accident. My GP is very smart, and I only asked why my total protein is in a high border (7.9), and he said let me run more test, and that's how we found out about my M protein, which is much higher than yours (1.3 g/dl = 13 g/l)!
I went through all testing, even a bone marrow biopsy. My myeloma specialists says that I have IgG low risk MGUS. All my other tests are ok, even my ratio, and my specialist wants to see me every 3 months, then every 6 months.
I can't tell you what I went through in the last 4 months since my diagnosis, but now I am happy and content. It could be much worse than this. So be happy your m protein is really low, concentrate on having a healthy diet, add some turmeric in your food or even take curcumin supplement, and enjoy your life
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: Accidental MGUS
I was diagnosed the same way that Mojbahar was. During a routine physical, it was found that my serum protein level was just a tad elevated, but I felt just fine. My GP was smart enough to remember the one multiple myeloma patient he had years ago, and asked to run some extra tests to investigate for the possibility of multiple myeloma. It was then quickly determined that I had smoldering multiple myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Accidental MGUS
Also found out accidently so to speak. Was in for routine blood work for high cholesterol checkup. It had been six months since my last checkup and all was fine previously. My total protein came back this time just slightly elevated past normal, and my doctor wanted to know if I had been sick that he didn't know about. I said no and asked why. He stated my protein was elevated and asked if it was ok to do another check to see if it was a false reading or for real.
Luckily my general doctor was a thorough doc. He called me a few weeks later to let me know he did not feel comfortable just letting the second positive go. So he referred me to a hematologist / oncologist and it's been a wild unwanted ride since then.
Luckily my general doctor was a thorough doc. He called me a few weeks later to let me know he did not feel comfortable just letting the second positive go. So he referred me to a hematologist / oncologist and it's been a wild unwanted ride since then.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Accidental MGUS
Welcome aboard, Eric
The discovery that I had MGUS was not an accident.
My story started ten years ago when I had developed a lymphoproliferative disorder in conjunction with anemia and neutropenia.
I was referred to a hematologist who immediately ordered a battery of blood tests (I counted 14 vials) that were suppose to shed light on what was ailing my bone marrow. One of those tests measured my immunoglobulin levels. That was when I was told that I had M proteins in the IgA region.
My hematologist told me not to worry about my M proteins. “Those proteins could be nothing”, she said. And I took her advice and did not worry about them. I just monitored their presence. However, after ten years, my not-to-worry MGUS became something. It became active myeloma. Now I have chemotherapy. Sigh.
Joe
The discovery that I had MGUS was not an accident.
My story started ten years ago when I had developed a lymphoproliferative disorder in conjunction with anemia and neutropenia.
I was referred to a hematologist who immediately ordered a battery of blood tests (I counted 14 vials) that were suppose to shed light on what was ailing my bone marrow. One of those tests measured my immunoglobulin levels. That was when I was told that I had M proteins in the IgA region.
My hematologist told me not to worry about my M proteins. “Those proteins could be nothing”, she said. And I took her advice and did not worry about them. I just monitored their presence. However, after ten years, my not-to-worry MGUS became something. It became active myeloma. Now I have chemotherapy. Sigh.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Accidental MGUS
Hats off to all the thorough and thoughtful doctors!
I was not diagnosed in the MGUS stage, though I probably had it at one point as I know I was sick for several years before my official diagnosis. I was diagnosed with advanced myeloma (very high M-spike), and my diagnosis was started by an ER doc who told me I have very high proteins in my blood, and was very anemic. I attended the ER after collapsing at work.
I was not diagnosed in the MGUS stage, though I probably had it at one point as I know I was sick for several years before my official diagnosis. I was diagnosed with advanced myeloma (very high M-spike), and my diagnosis was started by an ER doc who told me I have very high proteins in my blood, and was very anemic. I attended the ER after collapsing at work.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Accidental MGUS
Hello to everyone.
I had a faint monoclonal band in January of 2016 and at follow up in August 2016 was diagnosed with MGUS. I had been diagnosed as having anemia in January of 2016, but started taking on over-the-counter iron supplement and as of today the iron is no longer low. Free light chain was high, as well as lactate dehydrogenase. My hematologist sees no concern as of now, and I follow up in February of 2017 with her.
I also have been diagnosed as having mixed connective tissue disease (MCTD) in January of 2016.
So that in itself may cause a high LDH result, and have also in my legs neuropathy.
I had a faint monoclonal band in January of 2016 and at follow up in August 2016 was diagnosed with MGUS. I had been diagnosed as having anemia in January of 2016, but started taking on over-the-counter iron supplement and as of today the iron is no longer low. Free light chain was high, as well as lactate dehydrogenase. My hematologist sees no concern as of now, and I follow up in February of 2017 with her.
I also have been diagnosed as having mixed connective tissue disease (MCTD) in January of 2016.
So that in itself may cause a high LDH result, and have also in my legs neuropathy.
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74Marine - Name: 74Marine
- Who do you know with myeloma?: Me=MGUS
- When were you/they diagnosed?: 08/05/2016
- Age at diagnosis: 61
Re: Accidental MGUS
Hello 74.
Couple of quick points.
First, it's better to have a multiple myeloma specialist who does multiple myeloma full time or near full time.
Second, MGUS could be slow growing, and usually is, however, not in every case. I think a minimum time to get it checked is every six months. Maybe a little more frequently at the beginning, until you are comfortable that the trend is indeed very flat. Your doctor can help determine exactly what to check, but the main thing, I think, would be to track the M-spike,
Thirdly, having anemia is actually one of the definitions of having active multiple myeloma (according to the CRAB criteria). From my wife's case, however, I know it is very valid to have MGUS and secondary anemia, not related to the MGUS – for instance, iron deficient anemia. My wife had that, and it too came back with iron treatments, but it does make the MGUS a little harder to track. When the iron no longer worked, the hemoglobin crashed, and she quickly went to smoldering and to active multiple myeloma (the MGUS stage did last about 8 years of slowly rising M-spike).
Good luck to you 74.
Couple of quick points.
First, it's better to have a multiple myeloma specialist who does multiple myeloma full time or near full time.
Second, MGUS could be slow growing, and usually is, however, not in every case. I think a minimum time to get it checked is every six months. Maybe a little more frequently at the beginning, until you are comfortable that the trend is indeed very flat. Your doctor can help determine exactly what to check, but the main thing, I think, would be to track the M-spike,
Thirdly, having anemia is actually one of the definitions of having active multiple myeloma (according to the CRAB criteria). From my wife's case, however, I know it is very valid to have MGUS and secondary anemia, not related to the MGUS – for instance, iron deficient anemia. My wife had that, and it too came back with iron treatments, but it does make the MGUS a little harder to track. When the iron no longer worked, the hemoglobin crashed, and she quickly went to smoldering and to active multiple myeloma (the MGUS stage did last about 8 years of slowly rising M-spike).
Good luck to you 74.
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JPC - Name: JPC
8 posts
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