Primary-Progressive MS Ask Me Anything – A Recap

Last week, MSAA held its third and final Ask Me Anything session of MS Awareness Month 2018!  Focusing on the topic of Primary-Progressive Multiple Sclerosis, MS Expert Steven Bromley, MD spent one hour answering 19 questions from our Facebook followers.

Some of the most popular questions from the AMA with Dr. Bromley include:

  • Is secondary progressive MS treated differently than Primary-Progressive?
  • What is the feedback from any of your patients who have now had their 6 month full dose of Ocrevus (after already having the first 2 half doses 6 months prior)?
  • Why does it hurt so much when I walk?
  • Is B12 injection helpful for MS fatigue?

Find the answers to these questions and many more on MSAA’s Facebook page or on the official transcript.

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Healthy Living with Primary-Progressive MS

It’s hard to believe we are headed into the last week of MS Awareness Month.  This week we will be focusing on Healthy Living with Primary-Progressive MS.  I know sometimes you may feel overwhelmed and discouraged by the lack of medical advances for PPMS patients.  Please know that according to MSAA’s website, MS research and medications have been making leaps and bounds over the past few years.  While scientists may need several years to accomplish such large goals, today’s approved drugs for MS are effective in slowing down disease activity for individuals with relapsing forms of the disease. This has been a dramatic step toward a cure.  Plus, with studies now being directed to PPMS as well, researchers believe it will only be a matter of time before individuals with PPMS may also have access to several effective disease-modifying treatments.  One medication — Ocrevus™ (ocrelizumab) — has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of PPMS as well as for relapsing forms of MS.  Ocrevus was made available to MS patients starting in 2017.  MSAA’s website has several articles about this new medication and we recommend you talking to your doctor to see if this medication could work for you.

Outside of medical advances, it’s also a good idea to develop healthy habits to combat MS.  Taking care of your overall health can improve your quality of life.

Here are some basic tips for a happier and healthier lifestyle:

  • Choose a diet rich in nutrients and vitamins.
  • Get regular exercise to help strengthen muscles.
  • Practice gentle exercise programs like tai chi and yoga to help with balance & flexibility.
  • Join a support group
  • Talk to family and friends about what you may be going through
  • Stay positive

Additionally, some people find that massage and mediation help to relieve stress and anxiety.  Assistive devices that can help you maintain your independence and freedom are important too.

Also, it is important to stay current on new developments in the MS community.  It is recommended that you educate yourself and join organizations that can provide you with information about PPMS and MS medical advances. One such organization is the Progressive MS Alliance, http://www.progressivemsalliance.org/

Finally, please join MSAA and Steven Bromley, MD for a live “Ask Me Anything” event exploring Primary-Progressive MS on Tuesday, March 27, 2018 from 6:00 – 7:00 pm Eastern. This online event will be hosted on MSAA’s Facebook page so please follow @MSassociation on Facebook and log in for the AMA on March 27, 2018 at 6:00 pm Eastern.

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MSAA to Host “Ask Me Anything”

Do you have questions about multiple sclerosis that you’ve been meaning to ask? Here’s your chance!

Join the Multiple Sclerosis Association of America on March 29, 2017 at 6:00 PM for an Ask Me Anything session with MS Expert, Dr. Barry Singer, on My MSAA Community. For one hour, Dr. Singer will answer your questions about MS posted in a designated conversation thread on the Community.

WHAT: MS Awareness Month “Ask Me Anything” (AMA)
WHO: MSAA and Dr. Barry Singer, Director of The MS Center for Innovations in Care in St. Louis, MO
WHEN: Wednesday, March 29th, 6:00 – 7:00 PM EST
WHERE: My MSAA Community on HealthUnlocked

If you would like to ask a question during the Ask Me Anything session, you will need to have or create a profile on My MSAA Community, our peer-to-peer online community in which you can share your MS journey, connect with others, and contribute to ongoing conversations – all from your phone, tablet, or computer.

Join us on My MSAA Community for this special “Ask Me Anything” session during MS Awareness Month to get answers to your questions!

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