Neurologic complications are often overlooked
Updated: Mar 31, 2021
Drs. McCoy and Baer made some important points in their Dec. 2017 article, Neurological Complications of Sjogren’s Syndrome: Diagnosis and Management (32):
Neurologic disease is a common complication of Sjogren’s. It can impact both the central and peripheral nervous systems.
Patients with predominant neurologic symptoms often lack SS-A and SS-B. A diagnosis in these patients relies heavily on the lip biopsy which is often not reliable (or even available). Patients may have serious neurologic problems from Sjogren’s and still not meet the Sjogren's Classification Criteria. Sjogren’s is often diagnosed very late in these patients.
Even when Sjogren’s is recognized, there is still not much of a roadmap for clinicians to follow. Key quotes from the article:
“There are no clinical trials evaluating the efficacy of systemic immune suppressive therapy for peripheral or central nervous system involvement.”
"... there is an urgency to develop appropriate definitions of neurologic complications of SS and clear parameters for clinical improvement.”
It is alarming that so little is known about how to assess and treat neurologic complications.
More confounding is that the least attention is paid to the neurologic features that plague the majority with Sjogren's: “brain fog”, headaches, and dysautonomia (33).
Even physical fatigue probably has a neurologic component. Because so little effort has gone into researching fatigue, the actual cause remains unclear. However, it is increasingly understood to be biological in origin, and not simply caused by depression and anxiety that often accompany chronic illness of all types (88).
Most patients have some combination of physical fatigue, brain fog, headache and dysautonomia. Many experience all of them on a daily basis. Surveys repeatedly identify physical fatigue and brain fog as the most disabling symptoms for patients. Clinicians without Sjogren's expertise are rarely aware of this. Little is known about the cause, diagnosis, or treatment of these life-changing symptoms. That is why they are often overlooked in the clinical setting.
We deserve better!