I was diagnosed with relapsing-remitting Multiple Sclerosis in December 2008. This is my blog about my life living with the roller-coaster world of MS with a little humor and advice thrown in!

Thursday, March 28, 2013

BG-12 Approval

Great news today!!!!  BG-12 was finally FDA approved yesterday!!  Not sure on when it will be available but ironically I have Dr. appt with Neuro on Monday and was dreading it.  I knew he was going to make me start taking my second choice of drug therapy if BG-12 wasn't out yet.  

So, for all of you fellow MS'er who have been waiting with me for quite a while on the new disease modifying therapy BG-12  it's here!!




Saturday, March 16, 2013

What If?


I hope everyone enjoyed their MS Awareness Week!!!  My guys are so sweet they wore MS T-shirts and orange ribbons to school and work this week. 

  Getting information on MS "out there" is one of the reasons that we have made such progress in the last 10 years on research and disease modifying drugs for Multiple Sclerosis.  

I usually take this time and concentrate on updating my MS blogs, profiles, and getting together either online or in person with fellow MS patients.  I am an advocate and MS Peer with the National MS Society. I also love our local MS Chapters Walk and I work on that.  

But, like some of you as much as I love my work with supporting MS I get a little down this time of year.  I feel more exposed with my personal diagnosis with MS and feel uncomfortable with the attention. There are a lot of people in my life that have no idea that I have MS.  It's not that I'm withholding that information it's just that it doesn't come up. 

  Then there is the added stress of worrying more this time of year with "I wonder how I will be next year?" or "How much longer til my next flare up?", "Will I need a wheelchair in my lifetime?"  Especially when I am in contact with fellow patients who are already experiencing these things.

So, I kind of have to kick myself and get over it.   It's normal to feel this way and with all the kick ass new meds on the horizon hopefully these questions for all of us will be no or never.

Have a fabulous week!!



Tuesday, March 12, 2013

MS Awareness Week



It's MS Awareness Month and this week is MS Awareness Week.  My guys wear orange ribbons to school and work this week and amazingly not everyone knows what the orange ribbon is for.  And that's why they wear them.  To educate people who don't know.  

Our local MS chapter is having it's annual MS Walk in April.  It's a wonderful event and gets quite a few people out to support MS. 

If you can, join your local chapter in this wonderful fund raiser.  You can walk for yourself or walk with a team for someone.  It's great fun and a great time to get together.   




Friday, March 8, 2013

Vanderbilt Multiple Sclerosis Center

Was thrilled to see this article on National MS Society web page!!!






Vanderbilt receives designation as Center for Comprehensive MS Care

2
Feb 28, 2013

Congratulations Vanderbilt Multiple Sclerosis Center


Congratulations to Dr. Sriram and staff at the Vanderbilt Multiple Sclerosis Center for receiving designation as a Center for Comprehensive MS Care by the National MS Society.
Centers for Comprehensive Care are led by clinicians with demonstrated knowledge and experience in treating MS and offer and coordinate a full array of medical, mental health, and rehab services and have a strong collaborative relationship with the National MS Society.
Vanderbilt Dr. Sriram