and Treatment of Pain and Disability
Purpose of Study: Based on very preliminary information, it appears that EMG studies of a few MHE patients suggest an unusual pattern of involvement that may have some importance in understanding nerve involvement in MHE and how to treat it. EMG reports and clinical descriptions from more patients are needed to determine the validity of these early findings.
Request for MHE Coalition Participation: Dr. Fishman has requested that the Coalition contact members who have undergone EMG studies for MHE-related nerve damage and inform them of this study and the opportunity to participate. For those who have undergone EMG testing, participation would include filling out a questionnaire and signing a release form, requesting that relevant medical records and copies of EMG tests and results be sent to Dr. Fishman. Participants who have never had an EMG but would be willing to undergo one on a research basis are also needed for this study.
As with any other research study, all personal information will be held in strictest confidence.
Why we feel this study is important: For some time now, we have been concerned with what appears to be a high incidence of symptoms related to nerve involvement, either due to exostoses or to their removal. Many of our members suffer from nerve pain, tingling sensations, numbness, or from pain syndromes including Reflex Sympathetic Dystrophy (“RSD”). We feel it is important to try to find out why so many experience these problems, and to find ways to help relieve their symptoms.
Dr. Fishman took the time from his very busy schedule to attend the 3rd Annual Northeast MHE Gathering to meet and speak with many of our members. He shows a real commitment to understanding nerve-related pain in MHE and to finding ways to deal with what is one of the most difficult types of pain to treat.
What you can do to help: If you have had an EMG and are interested in participating, or if you would be willing to undergo the test for the purposes of research, whether or not you have had one, please contact Sarah Ziegler for more information about the study. Please remember that asking questions does not commit you to participate!
