Waldenstrom's Macroglobulinemia Community
syptoms and tests
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This patient support community is for discussions relating to Waldenstrom's Macroglobulinemia, non-Hodgkin lymphoma, monoclonal gammopathy of unknown significance (MGUS), multiple myeloma, and plasmapheresis.

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syptoms and tests

Hi:  I was wondering what are the tests for this rare cancer?  I  have been sick for over 2 years and
have along with various dx's that dont cover everything still feel this goes under one umbrella- due to evrything happening within a year.  The reason your group caught my eye, as I have no clue to the symptoms but my globulin test comes back off, and forgive me, it was the first clue that anything was wrong I dont remember if it was high or low, I think high.  I have abdominal pain, and the gastro is leaning towards pancreatitis, but this is a hard dx to make and can take a while before your " pancreas calcifys enough to be seen"  I also have mild pulm hypertension, hyperlipedemia, and low calcium.  please if anybody has a clue??  Oh yes also alot of breathlessness....
I hope I posted in the right place.... Denise
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Hi,

So sorry to hear of your dx!  :(   I'm not a doctor and therefore cannot answer your questions, but here is some general  information.

Congestive Heart Failure,  is listed as a "complication" of WM, which could explain your shortness of breath

Gastrointestinal Bleeding - is listed as a "complication" of WM, which could explain your stomach pain

Vision Problems also are listed as a complication.

There is a LONG list of symptoms with WM which include:

Bleeding  gums
Bluish skin discoloration
Blurred or decreased vision
Bone lesions (rare)
Burning pain
Dizziness
Easy bruising of the skin
Enlarged Veins in Eyes
Fatigue
Fingers that change color upon pressure
Flank pain
Headache
Mental status changes
Nosebleeds
Numbness or tingling
Peripheral neuropathy
Rash
Swollen glands
Swollen spleen
Swollen lymph nodes
Unintentional weight loss
Vision loss in one eye

Tests are:

24-hour urine protein
Blood Chemistry
Bone marrow examination
CBC (Complete Blood Count)
Examination of the Liver
Examination of the Lymph Nodes
Examination of the Spleen
Immunofixation in urine
Serum globulin electrophoresis
Serum protein electrophoresis
Serum Viscosity Test
T (thymus derived) lymphocyte count
Total protein

According to the NIH:

"A test called serum protein electrophoresis shows an increased amount of the IgM antibody. Levels seen in Waldenstrom's macroglobulinemia are generally greater than 3 g/dL."

I hope this is helpful to you and do hope that you can get medical attention as soon as possible.

Carol




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417007_tn?1310937571
I am not a doc but I have Waldenstrom's. A key symptom is anemia (low hemoglobin). This is due to the bone marrow generating large abnormal cells that restrict the generation of red blood cells. The disease is typically identified via an IGM Serum blood test and confirmed via a bone marrow biopsy.  
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264121_tn?1313033056
I believe a diagnosis can be made via eletropheresis of the blood and a bone marrow biopsy as Chillydip is saying.  Anemia is one of the symptoms, the anemia in this case is due to what is called "hyperviscosity syndrome" meaning that excess paraproteins in the blood cause it to be too thick and this causes anemia.

I've read that the globulin being high can be an indicator.  A condition called cryoglobulinemia, which can harm the kidneys, can cause peripheral neuropathy, causing pain in the extremities.

My grandmother has Waldenstrom's.  Only about 1500 people in the US per year are diagnosed with it.  This is a new forum, and we're hoping it can grow and be a support to people with Waldenstrom's and that everyone can learn from each other, so I hope everyone sticks around.

Sydney
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Avatar_f_tn
thanks for the answers, well 2 questions....
What is the average life span? at diagnosis
and what Dr. do you suggest, maybe a rhuemotologist
would check all the different Iga in my blood,
We do have alot of those right??
Are they called antigens or proteins??

Thank you, I definately need answers!!!
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Avatar_n_tn
Hi.
I agree with the previous posts.
Just want to ask what symptoms you are experiencing now aside from those you listed earlier.
Macroglobulinemia is less frequent than myeloma.  The median age of diagnosis is 63 years.
Symptoms include severe fatigue (85%), bleeding (60%), neurologic/nerve palsies (17%), bone pain (10%).
Signs include lymphadenopathy (40%), hepatomegaly (30%), splenomegaly (30%), hepatosplenomegaly (25%).
If you are suspecting that you may have macroglobulinemia, you may consult a hematologist for proper evaluation and management.
Good luck.
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