Advocating for MS



I am finally on my way to becoming an MS advocate.  Biogen Idec, the company that developed Tysabri, my current MS therapy, has recruited me as a speaker.  This is very exciting for me.  If you follow my blog then you know that I have been trying to become an advocate for people with Multiple Sclerosis.  I will be expected to talk about how MS affects me and why I chose Tysabri for my MS therapy.  As I mentioned before, I am supposed to speak at an upcoming dinner in October here in Reno.  I also received an invitation to a conference in Boston for MS advocates.  Boston?  That's cool but it will be in December so you know it's going to be extremely cold.  I plan to go and I'm really looking foward to learning how to be a great speaker.  

My mission is to motivate and encourage people to stand strong and take control of their health, no matter what your condition is.  Doctors don't know everything and it's very important for you to do your own research.  Write down any issues, concerns or symptoms that you have before each doctor appointment.  

I also want to be involved in government relations.  Advocating for positive changes, better healthcare and research policies. Caregivers also need more resources and tools to care for their loved ones with MS.

I want my MS diagnosis to count and make a difference in the lives of everyone with MS by learning as much as I can and sharing it with everyone however I can. 

Please ask me anything that you want to know about me and or MS.   You can either comment here or e-mail me at chocklitgirl@gmail.com.

New Symptoms pt. 2

Last night I experienced a new symptom.  I was sitting in bed and I noticed this tingling sensation in my forearms and hands.  It went on for about 20 minutes.  It felt like they were asleep but really it's what happens before you go numb.  My feet started out the same way in the beginning.  Since this sensation is in my arms, that means that I must have new lesions in my spinal cord near the nerves that affect my arms.  I don't know. Since I'm on Tysabri, I'm supposed to contact my neurologist anytime I experience new or worsening symptoms.  I cannot take any other disease modifying drug or steroids for 6 months after stopping Tysabri.  Supposedly that's how long it stays in your system.

 I was explaining to a friend that MS affects both your brain and spinal cord and that's why I experience such a wide range of symptoms.  She didn't realize this and she asked me if I worry about my future.  Yeah, maybe sometimes I find myself thinking ahead but I don't worry about the future because tomorrow isn't promised to me or anyone else.  I'm finding out that a lot of people, including my friends don't know much about MS at all.  They seem to get it confused with Muscular Dystrophy, another debilitating disease except it can be fatal.  MS is rarely fatal. 

I see that my thoughts of becoming an MS activist need to be put into action.  I would like to speak to others about MS.  I actually enjoy answering people's questions about my condition.  As long as people want to know, then I don't mind telling them.  I guess I better get started on finding out what my next step should be because I am very serious about this.  I do as much research as I can and that's another thing.  People don't feel like they have the time to research their situations but I strongly encourage it.  Whether you have MS or any other condition, take the time to educate yourself as much as you possibly can.