Ask the Expert: The “Pentad” Patient

VIRTUAL MEETING - October 28, 2021

Dr. Ilene Ruhoy, one of few Chiari neurologists, joins us to discuss ‘The Pentad Patient’. The pentad diagnoses are POTS/dysautonomia, MCAS, GI dysfunction (MALS, SIBO, gastroparesis), Autoimmunity, and hypermobility type EDS, often seen in those with Chiari and cranial cervical instability and tethered cord. Dr. Ruhoy dives into definitions of each of these separate diagnoses and a bit about how they are diagnosed and treated, and even touches on the Septad patient. In the Q&A portion, Dr. Ruhoy expands on neurological symptoms for CCI as it pertains to an EDS patient, a more in-depth look at the immune-based treatments.

Other questions included: What are the latest general recommendations for pentad hEDS patients in terms of pain and headache management medicines and strategies? How to find qualified EDS-knowledgeable neurosurgeons for children AND adults that take insurance? And how can mast cells or other inflammatory processes contribute to connective tissue breakdown/disorders in those who do not display classic systemic signs of EDS/hypermobility/connective tissue laxity?

This lecture and Q&A was given completely virtually on October 28, 2021 under the Ask the Expert Series. (2021)

Note from Bobby Jones CSF: We want to take a moment to sincerely thank all those who donated in support of this virtual presentation. No one at the organization was expecting that much generosity during such a difficult time for us all. From the bottom of the hearts of our boards, staff and volunteers, we want to thank you for your donations. Your kindness continues to motivate us and makes us all the more certain that this work is valuable and helping the people who need it. Thank you.
Full transcript (coming soon):

Revised: 11/2021