Hello,
Lorraine here from Suffolk County, New York,
I was diagnosed in May of 2018 with IgM MGUS. Had a bone marrow biopsy in June. Along with MGUS, I have rouleaux, cold agglutinin, and hemolysis. I go back for blood work in October to check and compare numbers.
I'm finding that when doing things I've always done (like mowing the lawn) I get out of breath pretty quick, and I have to shower to cool myself down. I'm also extremely tired most of the time. It's very annoying, may I say, being that it's hard to get things done on a daily basis.
Make it a great day!
Lorraine
Forums
4 posts
• Page 1 of 1
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Lorraine - Name: Lorraine
- Who do you know with myeloma?: Me- MGUS
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 53
Re: My story: MGUS, rouleaux, cold agglutinin & hemolysis
I was just looking at my lawn thinking to myself, it ain't gonna mow itself. I moved into a new house in June and have been doing work inside. I put an industrial-style table together 2 days ago, and I am still wiped out from that. I feel your pain. Literally.
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Joanna-H - Name: Joanna
- Who do you know with myeloma?: Me - MGUS
- When were you/they diagnosed?: 12-2017
- Age at diagnosis: 44
Re: My story: MGUS, rouleaux, cold agglutinin & hemolysis
Hi Lorraine,
Welcome to the forum.
Sorry to hear that you've got some additional issues (cold agglutinin disease, etc.) in addition to your MGUS. However, if you haven't been told already, there's a good chance that your IgM MGUS and other disorders are all connected with one another.
The elevated IgM level that often results from IgM MGUS makes it more likely that red blood cells stick to each other. That's what causes both cold agglutinin disease and rouleaux. Both conditions are the result of red blood cells sticking to each other more than they should.
When red cells stick together like you see with cold agglutinin disease and rouleaux, they don't live as long as they normally do, and their premature destruction is a form of haemolysis.
So the IgM MGUS, cold agglutinin, rouleaux, and haemolysis you have are likely to be linked to one another. Also, just so you know, the haemolysis could end up causing anaemia.
Some of these issues are discussed in this good article about MGUS in general (not just IgM MGUS) and how it can manifest itself:
"The Clinical Relevance And Management Of Monoclonal Gammopathy Of Undetermined Significance And Related Disorders: Recommendations From The European Myeloma Network," Haematologica, June 2014 (full text of article)
Also, this article is a good resource specifically about IgM MGUS and other IgM-related disorders:
J Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein", The Hematologist, Sep 15, 2014 (full text of article)
Cheers!
Welcome to the forum.
Sorry to hear that you've got some additional issues (cold agglutinin disease, etc.) in addition to your MGUS. However, if you haven't been told already, there's a good chance that your IgM MGUS and other disorders are all connected with one another.
The elevated IgM level that often results from IgM MGUS makes it more likely that red blood cells stick to each other. That's what causes both cold agglutinin disease and rouleaux. Both conditions are the result of red blood cells sticking to each other more than they should.
When red cells stick together like you see with cold agglutinin disease and rouleaux, they don't live as long as they normally do, and their premature destruction is a form of haemolysis.
So the IgM MGUS, cold agglutinin, rouleaux, and haemolysis you have are likely to be linked to one another. Also, just so you know, the haemolysis could end up causing anaemia.
Some of these issues are discussed in this good article about MGUS in general (not just IgM MGUS) and how it can manifest itself:
"The Clinical Relevance And Management Of Monoclonal Gammopathy Of Undetermined Significance And Related Disorders: Recommendations From The European Myeloma Network," Haematologica, June 2014 (full text of article)
Also, this article is a good resource specifically about IgM MGUS and other IgM-related disorders:
J Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein", The Hematologist, Sep 15, 2014 (full text of article)
Cheers!
Re: My story: MGUS, rouleaux, cold agglutinin & hemolysis
Thank you, Ian. I will be reading what you sent.
Joanna - People look at me like really, I'm glad you get it! Sorry that you do though!
Joanna - People look at me like really, I'm glad you get it! Sorry that you do though!
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Lorraine - Name: Lorraine
- Who do you know with myeloma?: Me- MGUS
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 53
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