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Up until a couple of months ago I'd never heard of MGUS: Monoclonal Gammopathy of Undetermined Significance. And I certainly wouldn't have known what that term meant. I do now, though.
MGUS is a condition in which an abnormal protein is in your blood. This abnormal protein is formed within your bone marrow. MGUS itself is harmless but sometimes it can progress to serious disease, such as:
Multiple myeloma
Light chain amyloidosis
Waldenstrom macroglobulinemia
Lymphoma
If you've been diagnosed with MGUS, please post here. I'm a newcomer to this so I value your shared experiences.
All I know so far based on one blood test is that I am at risk for MGUS progressing to multiple myeloma, which is a cancer of the plasma cells in bone marrow. There is no cure. Currently the average survival for MM patients is about five years but much depends on the specialist you choose.
I am at the very beginning of my "MGUS journey" (I hate that term). I haven't had my first six month follow-up blood draw to check for progression yet. Me, I'm leaning heavily on "There's a 70% chance you won't get MM" from my hematologist. Never dreamed I would ever need a hematologist. By the bye, this all came about because an American company had their hand sanitizer made in China, it was contaminated with benzene and I used it.
Very sorry to read this, Fluffy. Hopefully it never progresses. I've not heard of MGUS either. Can you please give the name of the blood test that shows risk for it? (I'm wondering if it's one of the tests that have to do with platelets.) Thank you, and good thoughts for your health.
Last edited by wildflowers27; 08-24-2021 at 08:28 AM..
Hi fluffythewondercat, I have MGUS too. I was diagnosed about a year and a half ago. I have to get blood tests and a 24 hour urine test done every six months. I get very anxious waiting for the results. It was found during routine blood work. You described MGUS very well in your post. Do you have any symptoms? I heard some people have symptoms like fatigue and tingling in their hands and feet. I have the tingling in my hands if I don’t move them often enough.
Sorry to hear that you have to hear about it. I am familiar with all of the conditions that you stated being a former hematology supervisor and later becoming a generalist for most of my career.
There's a lump of disorders that can be grouped into plasma cell dyscrasias. What they have in common is the plasma cell products of antibodies and antibody fragments. Antibodies are proteins and so the screening for all of these is a test for total protein that is present in the comprehensive metabolic panel. Once they see the elevated result then more specific tests can be done to separate and identify the protein as an antibody which are found in the gamma region of the protein fraction thus the term "gammopathy". The term monoclonal means that rather than having a lot of different plasma cells producing antibodies all of which are different (polyclonal or polyclonal gammopathy) the protein antibody is being produced by one clone of plasma cells and because they are from the same clone identical cells it produces one identical protein. This shows up as a spike on protein separation.
We don't know the significance of this lowered concentration of antibodies and fragments because there can be other conditions that can produce monoclonal spikes. We don't know all of them but some conditions included on the list that you mentioned.
The proteins produced can have clinical significance and yield symptoms in which we see the spectrum of disease presentation.
Some conditions are difficult to diagnose while other more advanced stages are fairly easy. I recall one recent instance of a coworker asking me to look at a blood smear they were having difficulty reviewing because the cells were not staining. That was a clue to me and from a few feet away without even looking through the microscope but with my naked eye I looked at the glass slide and saw a distinct purplish color to the slide and told her it was multiple myeloma. She asked how did I know. The protein interferes with staining of the cells and gives this off color to the slide. Every time I have seen this I have performed a total protein test on my own to confirm the high protein level and have notified the clinicians about the possibility.
Some conditions like Waldenstrom macroglobulinemia can be very difficult to deal with in the laboratory. They are challenging in trying to obtain reliable results with regards to the CBC and patience is required. Sometimes manual methods have to be employed.
Platelet counts are not used for screening for MM but it is used for assessing bone marrow adequacy or invasion by disease processes.
Hi fluffythewondercat, I have MGUS too. I was diagnosed about a year and a half ago. I have to get blood tests and a 24 hour urine test done every six months. I get very anxious waiting for the results. It was found during routine blood work. You described MGUS very well in your post. Do you have any symptoms? I heard some people have symptoms like fatigue and tingling in their hands and feet. I have the tingling in my hands if I don’t move them often enough.
I don't have any symptoms. I am sometimes fatigued but I can usually ascribe that to, say, the fact that I got up at 2 am yesterday and drove 200 miles to get a COVID-19 saliva test. (I slept really well last night. )
I'm told that if you're diagnosed early (i.e. you have MGUS but it hasn't progressed) you've won the lottery. And then there are the people who didn't know about MGUS whose disease progressed into full-blown plasma cell cancer and they didn't find THAT out for a while because they rarely see a doctor...until a bone or vertebra breaks and they get the bad news.
For most people MGUS will never progress. So there's that to keep in mind. I try to enjoy life and not sweat it.
Been watching some YouTube videos on the internet about MGUS. I’d send a link but I don’t know how to? One woman was diagnosed with MGUS at the age of 28! Also, joined three facebook groups for MGUS. All very informative. Many people seem to experience peripheral neuropathy as a symptom of this disease ( if you can call it a disease?).
On February 26, 2020 (days before we broke for Covid) I was diagnosed with MGUS. I have IGM- Kappa. I have actually never worked in my workplace with the knowledge that I had MGUS.
The good news for me... I am 99% likely to progress (if I do) to something called.. Waldenstrom Macroglobulinemia. It is a rare cancer but, it is also "IDOLENT" - meaning that it is very slow growing. 90% are still alive after 5 years and 67% after 10. And since most people who have it are over 70 much of the deaths may be due to other things. Trivia Alert- the Shah of Iran died of it... and the entire Iranan hostage situation happened because he left Iran to get treatment.
I go to Dana Farber in Massachusetts. I had been going to just my regular doctor's hemotolgist/ oncologists but they were imho idiots. I recommend a MM specialist.
I had a consult with Dr. Ken Anderson (who is the doctor for Tom Brokaw -- who has MM) but when I asked to be seen at Dana Farber I thought that I shouldn't see him because he is a Multiple Myeloma doctor. I am seen at the Bing Center for Waldenstroms. Fluffy Dr. Anderson was very optimistic that survival for MM is currently around 10 years (the 5 years is a historical average) and he thinks with immunotherapy it will be a chronic disease. Tom Brokaw is 80 and has had it for 8 years. There are major breakthroughs happening with blood cancers.
Hey I started a blog if you guys want to follow along.
Very sorry to read this, Fluffy. Hopefully it never progresses. I've not heard of MGUS either. Can you please give the name of the blood test that shows risk for it? (I'm wondering if it's one of the tests that have to do with platelets.) Thank you, and good thoughts for your health.
serum protein electrophoresis (SPEP) - Actually I was shocked at how cheap this was at Ulta Labs if you want to order it yourself.
Also, I am part of a clinical study called PC Crowd but it also has a study called "Promise" that will test you if you are African American and or have a relative with MGUS or any blood cancer. I think they will also pay you $50.00.
If I was rich, which I am not, I would found a foundation for every single person in the USA to get tested -- the test is pretty cheap.
It would be great to know also how many might have this condition and how many do not progress. We don't really know now because people only know they have it when found randomly.
I go to Dana Farber in Massachusetts. I had been going to just my regular doctor's hemotolgist/ oncologists but they were imho idiots. I recommend a MM specialist.
I had a consult with Dr. Ken Anderson (who is the doctor for Tom Brokaw -- who has MM)
You know, that is exactly the question I was hoping to ask someone, who is Tom Brokaw's doctor. And now I know! Thanks!
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but when I asked to be seen at Dana Farber I thought that I shouldn't see him because he is a Multiple Myeloma doctor. I am seen at the Bing Center for Waldenstroms. Fluffy Dr. Anderson was very optimistic that survival for MM is currently around 10 years (the 5 years is a historical average) and he thinks with immunotherapy it will be a chronic disease. Tom Brokaw is 80 and has had it for 8 years. There are major breakthroughs happening with blood cancers.
I've heard there is a lot of research going on, which is reassuring.
I'm gonna have to get a bigger RV if we're going to visit Massachusetts from time to time. Love to travel!
Quote:
Hey I started a blog if you guys want to follow along.
You bet. I don't do FB, though. I just never really got the hang of it.
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