In patients with idiopathic multicentric Castleman disease (iMCD), a delayed diagnosis is common. That’s why it’s important to track your symptoms and report them to your doctor.
If you are someone who potentially has iMCD, your journey may start at a primary care
physician’s office. You might meet doctors who specialize in different types of conditions, and
they may conduct a few tests to help you get a proper diagnosis.
Getting an accurate diagnosis for a rare disease like iMCD is never easy. It’s important to work
with doctors and remain persistent throughout the diagnostic journey.
For years, little has been known about iMCD, which has made the diagnostic journey frustrating for patients.
Shortening the time from symptom onset to diagnosis can help improve long-term outcomes. There
are also guidelines in place to
assist doctors in diagnosing this mysterious condition.
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Viral hemophagocytic lymphohistiocytosis.
A doctor who specializes in the branch of medicine that deals with rheumatic conditions.
Polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes.
Positron emission tomography (PET) is a method of producing a 3-dimensional image of the internal
structures of body tissues after administering a natural biochemical substance like glucose or fatty
acids. These images are generated with the help of a computer.
A doctor who evaluates the changes caused by disease in tissues and body fluids and helps reach a
A doctor who specializes in the diagnosis and treatment of kidney abnormalities.
Macrophage activation syndrome.
Malignancy-associated hemophagocytic lymphohistiocytosis.
A disease in which cells of the lymph system grow excessively
Lymph nodes make immune cells that help the body fight infection.
A key signaling molecule that helps to regulate the body’s immune system.
Infectious disease medicine is the subspecialty of internal medicine that focuses on diagnosing and
A rare condition that affects multiple groups of lymph nodes throughout the body. Patients with iMCD
are HIV negative and HHV-8 negative.
The underlying cause or origin of a disease is unknown.
Human immunodeficiency virus.
A doctor who specializes in the branch of medical science that deals with cancers of the blood and
Powerful molecules that are normally secreted by the cells of the immune system in response to
infectious or noninfectious agents.
An overreaction of the body’s immune system in which too many cytokines are released into the
bloodstream very quickly, with potentially severe or life-threatening effects.
Computed tomography (CT) is a method of producing an image of the internal structures by passing an
x‑ray through the body.
The removal and examination of tissue, cells, or fluids from the body.
A condition in which the body’s immune system accidentally attacks itself.
Autoimmune lymphoproliferative syndrome.
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