Knowing what it takes to diagnose iMCD
Diagnostic Tests
Patience and persistence can play a key role in getting an accurate diagnosis
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.
Doctors
- A primary care physician will conduct blood tests/imaging and refer you to a specialist
- An infectious disease expert will rule out infections
- A rheumatologist will rule out autoimmune conditions
- A nephrologist will check to ensure that kidneys are functioning properly
- A hematologist-oncologist will rule out cancerous conditions
- A surgeon will remove a swollen lymph node
- A pathologist will examine a swollen lymph node
This list is not a complete representation of all the doctors a patient might meet during their journey to diagnosis.
Tests
- Physical examination of swollen lymph nodes, enlarged organs, and fluid accumulation
- Blood tests to look for signs of infection, autoimmune conditions, and kidney damage
- An x-ray, a PET scan, or a CT scan will reveal the presence of multiple swollen lymph nodes and enlarged organs
Biopsies
- Fine needle aspiration (FNA) or core biopsy may be used to examine a swollen lymph node, but the results may be inconclusive
- An excisional biopsy of a swollen lymph node is the only definitive way to diagnose iMCD
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.
Find out what iMCD can look like
Guidelines that can help diagnose iMCD
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.
Major Criteria
- A swollen lymph node should be removed and examined under a microscope to see if it has features consistent with Castleman disease
- Imaging tests like CT scans or PET scans will help confirm the presence of multiple swollen lymph nodes throughout the body
Minor Criteria
- Patients should meet at least 2 of 11 minor criteria, such as the presence of enlarged liver, enlarged spleen, or other symptoms like fever, fatigue, or fluid accumulation
- 1 or more criteria must be a laboratory abnormality, such as anemia or increased protein in the urine
Exclusion Criteria
- Castleman-like changes and clinical abnormalities may be present in several cancerous, infectious, and autoimmune conditions and should be excluded by the process of elimination
- HHV-8 must also be excluded
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Your report
A diagnosis of idiopathic multicentric Castleman disease (iMCD) requires the presence of multiple swollen or enlarged lymph nodes. In some patients, the swollen lymph nodes may not be visible and may require imaging tests to confirm their presence. These symptoms alone are not enough to diagnose iMCD, as they could be signs of other diseases.
Talk to your doctor if you have any questions about this report.
Additional information about iMCD is available for healthcare professionals at KnowiMCD.com/HCP.
To protect your privacy, KnowiMCD.com does not save any of your information. Please be sure to download, save, and/or print this report.
Healthcare professionals can find information about the latest diagnostic criteria and treatment options by visiting
Your report
A diagnosis of idiopathic multicentric Castleman disease (iMCD) requires the presence of multiple swollen or enlarged lymph nodes. In some patients, the swollen lymph nodes may not be visible and may require imaging tests to confirm their presence. These symptoms alone are not enough to diagnose iMCD, as they could be signs of other diseases.
Talk to your doctor if you have any questions about this report.
Additional information about iMCD is available for healthcare professionals at KnowiMCD.com/HCP.
To protect your privacy, KnowiMCD.com does not save any of your information. Please be sure to download, save, and/or print this report.
Possible tests
In order to confirm a diagnosis of iMCD, a doctor will need to perform tests to detect the presence of multiple swollen lymph nodes.
- Physical examination
- Lab tests—blood or urine test
- Imaging tests—CT scan, x-ray, MRI, PET scan
- Excisional biopsy
By performing some of the above-mentioned tests, a doctor will be able to eliminate the possibility of autoimmune, cancerous, and infectious diseases. An excisional biopsy of the enlarged lymph node can confirm the diagnosis of iMCD.
The road to diagnosis
iMCD is a rare disease that can be difficult to diagnose because it can mimic so many other diseases. It may take a while to receive an accurate diagnosis because your doctor must rule out several different conditions before suspecting iMCD.
You may start your diagnosis journey at your primary care physician’s office, where you may be referred to a specialist.
Preparing for your appointment
Here are some tips to help you have a conversation with your doctor:
- Write down any symptoms you’ve experienced, even if they may seem unrelated
- Share the results of this Symptom Checker with your doctor
By performing some of the above-mentioned tests, a doctor will be able to eliminate the possibility of autoimmune, cancerous, and infectious diseases. An excisional biopsy of the enlarged lymph node can confirm the diagnosis of iMCD.
Start the conversation
Here are some tips to help you talk to your doctor about iMCD:
- What kinds of tests might I need to confirm iMCD?
- Do I need to plan for follow-up visits?
- What treatments are available for iMCD? How will they affect my life?
- Do you have any educational materials that I can take with me?
- What else do I need to know about iMCD?
Notes:
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Healthcare professionals can find information about the latest diagnostic criteria and treatment options by visiting
Your iMCD Diary
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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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