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Wednesday, August 27, 2014

Building a Stronger MS Community

Building a Stronger MS Community
By Cherie C. Binns RN BS MSCN



August 15, 2014
It was my privilege today to present a program for the Multiple Sclerosis Foundation (MSF) entitled “Building a Stronger MS community”. The focus of the program was to teach people to be their own Health Care Advocate by maximizing visit time with members of their Health Care Team. We also showed them how to find resources if their Health Care Plan drops a provider or medication on which they depend. Learning how to navigate the maze of Health Insurance language and restrictions, talk to your Physician or Congress person were topics that were addressed.


Watch for the Fall issue of MSFOCUS Magazine for highlights of this event. Some of the questions asked by attendees that I was able to address were:

· Can you explain how people present with and respond to treatment at various ages and stages in the disease process?

· Why aren’t we hearing more about Stem Cell Research?

· How do you get medication you need when it is on back order?

· How can you tell if you need a name brand drug instead of a Generic and is there any way to get it if you need it?

· Can you tell us more about how diet impacts MS (Dr. Terry Wahl and her Paleo-Diet was questioned….can a person really “cure MS” by eating like she does)?

· What are things that make MS worse that we can have some control over?

· Can you tell us about…? (LDN, Acupuncture, Ampyra, Vitamin D therapy, B-12 therapy and more)


· What is going on in research now and why can’t we get into trials? (directed to their Neurologist and www.clinicaltrials.gov). Folks were also made aware that they should not have to pay for their treatment in a valid Clinical trial and there was at least a 50% chance in most trials that they would NOT be on real medication but might be on placebo.


Thank you to the staff from MSF who flew from Florida to Rhode Island to offer this educational opportunity to people from RI and MA. It was a pleasure.


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