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MGUS with symptoms?
Has anyone on this forum been diagnosed with MGUS with symptoms? I have been diagnosed with MGUS (IgG lambda) for four years. I also have a bleeding disorder (inhibitor to a coagulation factor believed to be associated with MGUS) and severe pruritus and urticaria. I have been to the Mayo Clinic and they believe the bleeding disorder, pruritus, and uticaria are all associated with MGUS. It was my belief that MGUS was asymptomatic. The pruritus is severe. Anyone's experience would be helpful.
Re: MGUS with symptoms?
Hello katfowler. Welcome to the forum.
I'm really sorry about the medical issues you have been having. It is great that you have been able to discuss the issues with doctors at an excellent centre such as the Mayo Clinic.
My understanding is that, although many MGUS patients have other medical conditions at the time they are diagnosed with MGUS, this does not mean that the other conditions are actually symptoms of MGUS.
Dr. Kapoor, who is a myeloma specialist at the Mayo Clinic, writes about this in a posting elsewhere in the forum. He says:
"A variety of clinical conditions can coincidently coexist in patients with monoclonal gammopathy. These include autoimmune disorders, certain skin conditions, infections, liver diseases and other cancers such as colon cancer, prostate cancer lung cancer and blood cancers, etc."
If you look at the classic research that has been done investigating how often MGUS occurs in people, what you find is that most people with the disease do not even know they have it. I am thinking in particular of the research done by Dr. Kyle and others at the Mayo Clinic, which involved a very large sample of people in the U.S. state of Minnesota.
The thing that I think makes it seem like MGUS has symptoms, particularly in younger people, is that so many of these people who discover they have MGUS find out about it because they are trying to understand the source of other problems, such as persistent hives and itching, or persistent joint pain, etc. Yet there are almost certainly many other people of the same age who also have MGUS, but the MGUS goes unnoticed because those other people do not have the lab tests done that uncover the MGUS.
None of what I've just written lessens, of course, the severity and importance of the other medical conditions often found in people such as yourself who have MGUS. I just don't know if it is correct – or helpful in terms of looking for solutions to those other conditions – to describe them as "symptoms" of MGUS.
I hope you and your doctors are able to find ways to treat and get rid of the other medical issues you're facing. Best wishes.
I'm really sorry about the medical issues you have been having. It is great that you have been able to discuss the issues with doctors at an excellent centre such as the Mayo Clinic.
My understanding is that, although many MGUS patients have other medical conditions at the time they are diagnosed with MGUS, this does not mean that the other conditions are actually symptoms of MGUS.
Dr. Kapoor, who is a myeloma specialist at the Mayo Clinic, writes about this in a posting elsewhere in the forum. He says:
"A variety of clinical conditions can coincidently coexist in patients with monoclonal gammopathy. These include autoimmune disorders, certain skin conditions, infections, liver diseases and other cancers such as colon cancer, prostate cancer lung cancer and blood cancers, etc."
If you look at the classic research that has been done investigating how often MGUS occurs in people, what you find is that most people with the disease do not even know they have it. I am thinking in particular of the research done by Dr. Kyle and others at the Mayo Clinic, which involved a very large sample of people in the U.S. state of Minnesota.
The thing that I think makes it seem like MGUS has symptoms, particularly in younger people, is that so many of these people who discover they have MGUS find out about it because they are trying to understand the source of other problems, such as persistent hives and itching, or persistent joint pain, etc. Yet there are almost certainly many other people of the same age who also have MGUS, but the MGUS goes unnoticed because those other people do not have the lab tests done that uncover the MGUS.
None of what I've just written lessens, of course, the severity and importance of the other medical conditions often found in people such as yourself who have MGUS. I just don't know if it is correct – or helpful in terms of looking for solutions to those other conditions – to describe them as "symptoms" of MGUS.
I hope you and your doctors are able to find ways to treat and get rid of the other medical issues you're facing. Best wishes.
Re: MGUS with symptoms?
Hello,
A compromised immune system can cause histamine reactions to food. I have a low normal level of IgG (involved immunoglobulin) and I had itching and sometimes hives when I ate high histamine foods. Green team, processed meats, beans, and the worst was anchovies. Sometimes I was up all night scratching. IgG food sensitivity is an adverse reaction to a food with no antigen-antibody response and since plasma cell precursor disease affects your antibodies, it may be possible that our symptoms are related.
Try to minimize the amount of high histamine foods and see if this helps.
J
A compromised immune system can cause histamine reactions to food. I have a low normal level of IgG (involved immunoglobulin) and I had itching and sometimes hives when I ate high histamine foods. Green team, processed meats, beans, and the worst was anchovies. Sometimes I was up all night scratching. IgG food sensitivity is an adverse reaction to a food with no antigen-antibody response and since plasma cell precursor disease affects your antibodies, it may be possible that our symptoms are related.
Try to minimize the amount of high histamine foods and see if this helps.
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
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