|'Wall of Hope', Walk MS, San Diego April 2013|
Sunday, April 28, 2013
Saturday, April 20, 2013
Wednesday, April 10, 2013
|Thanks for no new lesions!|
P.S. Weird, I know, to write a thank you note to a drug. I’d be remiss if I didn’t recognize the fact that not everyone can take the big T. Either because of a positive test result for the JC Anti Virus or simply because it is soOoOoO expensive/overpriced. If you are able to go with Tysabri, be sure to inquire about their financial services through Active Access.
P.P.S. If you’d like to read about how I made the decision to go with Tysabri, check out this post. I was presented with four drugs when a new lesion appeared last year and it was not easy to sort through everything!
Sunday, March 31, 2013
It’s a wrap! March 2013, MS Awareness Month, is over. And, so many important things happened in the MS community. Like, really big things!
- The biggest
news? The FDA nod for BG-12. Whoop! Whoop! This is going to make a lot of MSers
very, very happy. Why? Because this is another oral treatment for RRMS. Read,
no injections and no infusions. Be sure to talk with your neuro about this, to
see if it’s the right med for you. Good luck with the possibility! P.S. I think
they changed the name to Tecfidera,
something to be aware of, if you try searching out info on Google.
Whoop, whoop! FDA nods Tecfidera!
- Jason Da Silva met 100% of his goal to help get
his documentary, “When
I Walk”, into theaters! Another whoop, whoop! Jason’s film is an emotional and
inspirational film about living with MS and disability. It’s an incredible achievement
and I, for one, can’t wait to see it!
"When I Walk" meets 100% of goal! (c) http://www.wheniwalk.com"... honestly, the making of this film helped get me through the past seven years. As my physical body changed, it acted as an emotional and creative support system..." - Jason Da Silva
- We know a lot more about the relationship between salt and MS. Who knew? Read here about the suggestion that dietary salt can stimulate the development of MS. I know, I know. It’s a study about mice, not people, but still serves as great foundation to fuel additional studies to better understand the correlation.
- Our friend Kate Milliken is putting emotion first in the MS community through her work on My Counterpane. She’s “… building a tool called the Moodifier for patients and caregivers to connect them by their similar illness and how they feel about it.” If you are interested in supporting this cool project, you may do so here. Neat stuff, right?
- And, another one of our friends, Amy Gurowitz, has Robbie Benson talking about MS Soft Serve. Amy’s doing great work in rallying support for her project, MS Soft Serve. Please take the time to check out what she’s doing: http://www.mssoftserve.com.
- The 13th Annual UCSD MS Symposium in San Diego was a great event that featured two amazing people at the podium. The overall message? First, Dr. Jody Corey-Bloom talked about symptom management, including understanding the side effects of your meds before attributing what you feel to MS. And, second, Dr. Timothy Vollmer talked about new paradigms in MS treatment and advised the audience to “…not treat on where are you today with your MS but based on where you night be at age 65.” Now if I can just get a copy of the presentation. So much good info but impossible to jot it all down in my notebook!
celebrates huge statistics during its month of debut. This amazing new site
reached over 16,000 “likes” on Facebook. Whoa.
Do go out there and check out it out. It’s a great space. And, who
knows? You may see a friendly and familiar face...me!
Check out this amazing new site! http://multiplesclerosis.net
- One a personal note, my latest MRI showed no new lesions! Yes! Tysabri? Keep up the good work.
- And, my latest JC Anti Virus test results were negative. Tysabri? Carry on and get down with your bad self.
- Yet, my vitamin D levels are too low. This means more 15-minute sun sessions, but certainly not running around naked.
And, if I missed important news this month, jot me a note here on the blog.
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