The diagnostic process starts with ruling out other conditions
Because idiopathic multicentric Castleman disease (iMCD) can look like
cancer, infectious diseases, or
My doctor [did] all kinds of tests—CT scan, ultrasound, and of course, blood tests.
– Yankee, iMCD patient
What it takes to get a confirmed diagnosis
The road to diagnosis can be long. That’s why it is important for you to report every symptom to your doctor.
The journey typically starts by meeting with a primary care physician who may refer you to a specialist. Following is a list of doctors you might meet and tests you might have to undergo.
Doctors you may meet
This list is not a complete representation of all the doctors you might meet during your journey to diagnosis.
- A primary care physician can conduct blood tests/imaging and refer you to a specialist
-
An
can rule out infectionsinfectious disease expert -
A
can rule out autoimmune conditionsrheumatologist
-
A
can check to ensure that your kidneys are functioning properlynephrologist -
A
can rule out cancerous conditionshematologist-oncologist - A surgeon can remove a swollen lymph node
-
A
can examine a swollen lymph nodepathologist
Tests you may undergo
The difference between an incisional and excisional biopsy
-
, includingIncisional biopsy andfine-needle aspiration , removes only a portion of the lymph node for examination. Results may be inconclusivecore biopsy -
An
removes the entire lymph node and is a more effective way to diagnose iMCDexcisional biopsy
Abbreviations: CT, computed tomography; PET, positron emission tomography.
Getting an accurate diagnosis for a rare disease like iMCD is never easy. It’s important to work with your doctors and remain persistent throughout the diagnostic journey.