Neurologic complications are often overlooked
Updated: May 10, 2020
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 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 to me is that even less attention has been paid to the neurologic features that plague the majority of us: “brain fog”, headaches, and dysautonomia (33).
Even physical fatigue probably has a neurologic component, although this is unclear. Most patients have some combination of these four symptoms; many experience all of them on a daily basis. Surveys show that physical fatigue and brain fog tend to be the most disabling symptoms for patients. Clinicians without Sjogren's expertise are rarely are 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!