Monday, October 24, 2011

Dinner and a Speech

On 10/20/11 I spoke at an MS Seminar called: Finding the right treatment for you.  My speech went very well.  I wasn’t as nervous as I thought I would be.  There were about 40 people there.  It was located downtown near the Truckee river and the setting was very nice.  I didn’t get to take pics or video.  It was pretty crowded in there.  The food was about 8 on a scale of 1 to 10.  Not only were my husband and daughter’s there with me but my mother and grandma came down from Hawthorne just to be there to support me.  The response to my speech was good.  People thanked me for sharing my story.  I just hope that people felt inspired and encouraged to take control of their MS.  I don’t like to see people doing bad when they can be doing so much better.  Through my personal story, I want people to see that they don’t have to live in fear of their choices but they do need to be wise. 

The guest speaker was a neurologist named Vincent Macaluso and I see him as a genius in the MS world.  It was good to hear things from a doctor/patient perspective.  He said that he enjoyed hearing my speech.  He has MS and is also on Tysabri.  He claims that there really is only 1 type of MS.  MS was split into 4 types in the 1860’s before they had the technology that we have.  He believes that 1 of the 4 types is not MS at all but more like Transverse Myelitis based on some brain scans that he studied and showed us.  I believe he was referring to PRMS-Primary Relapsing MS which only about 5% of people with MS are considered to have this type.  He did say there should be more studies on that.

Based on his experience with his patient’s, he believes that Tysabri is for anyone with MS as long as their immune system can handle it.  If a person’s immune system is already weak then it would not be wise to use a treatment as aggressive as Tysabri.  Not all lesions are seen on an MRI.  When you consider the size of a nerve, it takes a lot of inflammation in a concentrated area to see a lesion on an MRI.  That makes it difficult to really get a true count of lesions in your CNS.  Not only that but some people with lesions don’t necessarily have MS, such as the elderly.  I learned so much from his speech and he is currently writing a book about his research and studies.  I definitely plan to buy it.  Everything he said made perfect sense to me.  It was like he was teaching a class and I enjoyed it. 

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