I intend this blog to be a mixture of my personal experiences with Multiple Sclerosis (MS) and news related to MS. Hopefully, I can shed an optimistic light on MS even though it is difficult to be an optimist living with MS.

Tuesday, January 25, 2011

State of the MS Address

As I listen to Obama's State of the Union Address, I sit here reading about MS research and drug therapies (hence the title of this post).
When I was first considering the different treatments, I spoke with a co-worker who has MS; she offered me a lot of reading materials on all of the therapies and told me her experiences with some of them.  At the time, I was only aware of the ABCR drugs.  She gave me information on those and then introduced me to Tysabri.  She essentially told me that it was one therapy she would never try because, although all medications have side effects, few state that a side effect is potential death (from developing a very serious infection).  I was reminded of that while reading this article.  Apparently, as of this month, there have been 85 confirmed cases of progressive multifocal leukoencephalopathy (PML, a viral infection of the brain that usually leads to death or severe disability) among people who have used Tysabri since it became available in 2006.  That seems very scary until you learn how many people have taken Tysabri.  The article says that "based on the 85 cases, the overall risk of PML is estimated to be 1.06 per 1000 patients."  Not terrible odds, but, personally, I still find it a little unnerving that increases the risk of PML.

In more optimistic news, this article talks about the progress made in MS research in 2010.  It says, "Exciting progress was made in 2010 in virtually every field of MS research." The article highlights progress made toward finding better therapies for MS, including the availability of the first disease-modifying therapy for MS taken by mouth; progress made toward finding ways to repair nervous system damage and toward improving quality of life and specific MS symptoms through exercise, meditation, rehabilitation and medications, including the first therapy specifically approved to treat a symptom of MS (Ampyra, which may help to improve the walking ability of people with MS); and progress toward understanding factors that influence whether a person develops MS, bringing us closer to finding ways to prevent the disease.

I will talk about each of these areas of progress in more detail in later posts.

Thank you to everyone who has sponsored me in the Walk MS 2011 - I have been absolutely overwhelmed by everyone's generosity.  I have raised 74% of my goal amount thanks to so many of your amazing contributions.  Also, thank you to everyone who has reached out to me through email, mail, facebook, and messages left through the donations page on the Walk MS website.  Your kind words have really moved me, I am so lucky to have such incredible people in my life.  Thanks again!

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