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A disease in disguise

  • Diagnostic Tests
  • What it looks like
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What Does iMCD Look Like?

iMCD mimics many different disorders

Idiopathic multicentric Castleman disease (iMCD) shares symptoms with many other conditions, which makes it difficult to diagnose. Learn about some of the various conditions that this disease can mimic.

Adapted from Fajgenbaum et al. Blood. 2017.

Autoimmune

Overlapping symptoms are fatigue, fever, and swollen glands

  • Rheumatoid arthritis
  • Juvenile idiopathic arthritis
  • Adult-onset Still disease
  • Lupus
  • IgG4-related disease
  • MAS or HLH

Malignant

Overlapping symptoms are fever, night sweats, weight loss, enlarged or swollen lymph nodes, and fatigue

  • Hodgkin lymphoma
  • Non-Hodgkin lymphoma
  • Follicular dendritic cell sarcoma
  • POEMS syndrome

Infectious

Overlapping symptoms are fever, loss of appetite, and swollen lymph nodes, most often in the neck and armpit

  • Epstein-Barr virus
  • HIV

Other

  • ALPS
  • M-HLH
  • V-HLH
  • HHV-8–associated multicentric Castleman disease

Possible roadblocks that make iMCD difficult to diagnose

The presentation of iMCD can vary from patient to patient. Some patients may show mild flu-like symptoms, such as fever, fatigue, cough, night sweats, and weight loss, while others may have life-threatening symptoms like organ failure. 

Here are some of the possible hurdles that patients might encounter during their diagnostic journey. 

Recurring illness like fever or flu?

Initial signs like fever and fatigue may be mistaken for an infection.

Steroids and chemotherapy failed to provide relief?

Steroids or chemotherapy can be used but may be ineffective.

Swollen
lymph nodes diagnosed as lymphoma?

Swollen lymph nodes can be mistaken for lymphoma.

Organ failure with an unknown cause?

Organ failure is seen in patients with iMCD and can be fatal.

Still searching for a diagnosis?

Many other conditions must be ruled out before suspecting iMCD.

Did you have
a fine needle, a core, or an excisional biopsy?

An excisional biopsy is the only definitive way to confirm iMCD.

If you have experienced any of the above-mentioned scenarios and haven’t received a diagnosis, talk to your doctor about iMCD.

A fine needle biopsy came back inconclusive. My primary care physician didn’t take that for an answer and wanted to take the whole thing out. When they did, the pathology result came back as Castleman disease.

Jessica, living with iMCD since 2017 Watch Jessica’s story
quote-jessica@2x
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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 diagnosis.

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 managing infections.

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.

Hemophagocytic lymphohistiocytosis.

Human immunodeficiency virus.

Human herpesvirus-8.

A doctor who specializes in the branch of medical science that deals with cancers of the blood and blood-forming tissues.

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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