In health care, nurses and providers are both taught a head-to-toe assessment. Assessment begins with the top of the patient’s head and ends with the tips of the patient’s toes. Each body is broken up into its parts, then collaged back together into an imperfect sum. This is an exceptionally useful way to assess a patient’s well-being in many different contexts, and elegantly systematizes the human body so that deterioration of any given part is less likely to be missed. It has also given rise to medical specialties that have expertise in each human piece. It is mostly clean and discreet.
Autoimmune disorders aren’t clean and discreet. They can affect multiple body systems with symptoms that may not be quantifiable, either by physical assessment or by test results. Because of the whole body nature of the lymphatic and hematologic systems, autoimmunity has a whole body highway system, and it likes to travel.
The following graphic is aspirational in the sense that it depicts how the diagnostic process by body system ideally functions, concluding with the correct diagnosis, effective treatment, remission of symptoms and a functional life.
Body System
In most of my posts so far, I have criticized the body system classification of autoimmune disorders. I realized that I haven’t defined what I mean by body system classification, as it relates to the diagnostic process, when autoimmune symptoms are present. So, what do I mean by body system? In the study of anatomy (parts of the body) and physiology (the way those parts work), and most critically in this context, pathophysiology (the way disease processes work), the human body is classified by system:
Neurologic
Endocrine
Hematologic
Cardiovascular
Lymphatic
Pulmonary
Renal/Urologic
Reproductive
Digestive
Musculoskeletal
Integumentary
Within each system are the recognizable body structures we know well:
(Huether & Mccance, 2008)
Autoimmune Signs/Symptoms
Autoimmune signs and symptoms are classified by body system. A sign is something that can be measured and quantified, a symptom is usually patient-reported and unable to be quantified and independently verified. A sign of an autoimmune disorder would be something observable by a clinician, like swollen, red joints, which would be classified in the musculoskeletal body system. A symptom of an autoimmune disorder would be brain fog. If, in addition to your swollen, red joints, your blood tests also showed inflammation, then the signs you have may be classified in the Hematologic and Musculoskeletal body systems. Brain fog may be classified in the Neurologic body system. In the context of the symptoms listed in this paragraph, there are possibly three body systems involved: Hematologic, Musculoskeletal and Neurological.
For example, let’s look at a standard list of symptoms of Lupus from the Autoimmune Association and pretend the diagnosis of Lupus is unknown:
Fatigue
Possible Body System Involved: Endocrine, Hematologic, Cardiovascular
Fever
Possible Body System Involved: Hematologic, Lymphatic
Joint pain, stiffness and swelling
Possible Body System Involved: Musculoskeletal
Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
Possible Body System Involved: Integumentary
Body System Specialist
Based on the symptoms above, you may see a dermatologist (Integumentary system), a rheumatologist (Musculoskeletal system), endocrinologist (Endocrine system), hematologist (Hematologic system), cardiologist (Cardiovascular system), or more.
Autoimmune Diagnosis
Once you’ve seen a specialist, or a collection of specialists, one or more of them may arrive at the diagnosis of Lupus from a combination of expert assessment and testing. An accurate diagnosis ideally leads to effective treatment.
Effective Treatment
Ideally leads to
Resolution of Symptoms
Which will restore your
Functional Life.
Except, all too often, it doesn’t work that way. For autoimmune patients, the weakest point in the Diagnostic Process by Body System is the point at which one human body, where a collection of symptoms reside, is fractured into multiple medical specialties and pinged between all of them like the hapless ball in a pinball machine. Most of the time, there is little coordination or communication between providers, with siloing of assessments and treatment within each body system. For example, an endocrinologist will only address thyroid or adrenal symptoms, and an ophthalmologist is only going to address your eye inflammation, but neither one is going to address the whole body process that is leading to multiple attacks on multiple fronts. And that’s only if you can get a diagnosis in the first place. There must be a better way, and I suspect the available scientific research already provides a roadmap to a better diagnostic process and classification system for autoimmune disorders. If it’s there, I intend to find it, organize it, and write about it here.
References
Huether, S. E., & Mccance, K. L. (2008). Understanding pathophysiology. Mosby.
Lupus. Autoimmune Association. (2022, February 11). Retrieved October 31, 2022, from https://autoimmune.org/disease-information/lupus/