If you are diagnosed with Waldenstrom’s macroglobulinemia (or if your doctor suspects you might suffer from it), you will likely be referred to a doctor who specializes in treating blood and bone marrow disorders (hematologist) or a doctor who specializes in treating cancer (oncologist).

Because appointments can be brief and because there is often a lot of ground to cover, it is a good idea to be well-prepared.  It is important to mention all your symptoms to the doctor, especially if symptoms are changing or getting worse over time. It might also be a good idea to be accompanied by a family member or a friend.

Here is some information to help you get ready and know what to expect from your doctor/specialist.

Sometimes, the large amounts of IgM in your bloodstream can damage the nerves in the body’s extremities, causing numbness or tingling in hands and feet, or problems with balance.

This is when your blood becomes thicker and more slow-flowing than normal due to large amounts of IgM in your bloodstream.  It affects up to 30% of people with WM. Hyperviscosity can cause changes in the back of the eyes, due to pressure in the retinal blood vessels, as well as shortness of breath, nosebleeds, blurred vision and dizziness.

Autoimmunity is a condition in which the patient’s immune system turns against healthy cells and body constituents.  WM patients are more prone to autoimmune diseases than others.  An example is hemolytic anemia, caused by antibodies destroying the patient’s red blood cells.  Immune Thrombocytopenia is the destruction of platelets by antibodies.  Fortunately, there are excellent treatments available.  Less well known to hematologists who are not familiar with WM is cold weather causing autoimmune reactions leading to blood thickening or gelling, and subsequent bleeding (commonly nasal bleeds) and poor circulation in the extremities (Cold Agglutinin Disease (CAD)).  Not all circulation problems in WM are caused by hyperviscosity.