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. 

Praise Report

Yesterday I got the results of my latest MRI.  The doc showed me and my husband a film that had a combination of every MRI that I've had from the beginning to now.  My most recent MRI shows no new abnormalities and that my previous lesions appear to be stable or slightly less pronounced.  Maybe the pain that I was feeling in my brain had nothing to do with lesions forming after all.  That's great news considering that I have been off treatments for over 3 months now.  At this point, I will restart treatments because 4 months appeared to be too long w/o treatment last time. 


I also received an e-mail from a Tysabri coordinator who wants me to speak at their next dinner here in Reno on October 20th.  I will be joined by a neurologist by the name of Vincent F. Macaluso from New York.  He also has MS and Tysabri is his current treatment as well.  I'm looking forward to this and I will be sure to blog all about my experience. 

This Is So Not About Me

You know what they say, "Everything happens for a reason".  I believe having MS is a way for me to learn more about life and see things in a different perspective.  I like to help people understand this disease.  I never asked God "why me" because this is so not about me.  Things happen to people all the time and it really is true that God will never put more on you than you can bear.  He knows what each one of us can handle and He knew that I could handle MS, with Him of course.  So I am on a mission.  I haven't had the opportunity to speak about MS in public since the MS Walk in May.  I signed up to be an advocate through the MS Society and I never heard back from anyone so maybe it wasn't a good fit.  Who knows.  That won't stop me from getting my message out, even if all I do is blog about it.


It's been almost 3 months since I have not received Tysabri.  Honestly, I have been doing wonderful.  Better than I expected.  I haven't had to work from home as often in these past 3 months as usual.  Today I have to get an MRI of my brain before I go back on Tysabri so my neurologist can tell if I have developed any new lesions in the past 3 months.  I can say that I most likely have because I can feel it.  I have mentioned this before.  The pain that I get in my head is different than a headache.  It's a shooting pain that will only last for a few seconds.  Don't you think that if scar tissue is developing in your brain you would be able to feel it?  It's like having little tumors all over your brain.  Lesions are also referred to as tumors or plaques.  I don't think I will ever be able to fully explain it but we'll see what the results of the MRI show.  I will be sure to post something as soon as I find out.


Another thing that I have noticed about myself is that I am constantly clenching my teeth.  I catch myself doing it all the time and I try to relax my jaw.  I will have to do some research about that because I grind my teeth in my sleep which is something that I have always done so I am not sure if the clenching is related to MS or Tysabri or something random.  My short term memory is a little worse.  I am able to talk better now.  I'm not stumbling over my words as much.  That's important since I want to be able to use my voice and talk about MS as much as I can and I do find myself educating the people around me.  I don't mind when people ask me questions about MS.


Please pray for me.  That is the best thing that anyone can do for me or anyone.  God is using me and I hope that my experience will help others with MS realize that no matter what, there is a purpose for their lives.  You do not have to be embarassed about MS.  I want to help family members of those with MS understand that they need to encourage their loved ones struggling from the many head to toe symptoms of MS, even though most of the time you can't tell by looking at them, unless they are in a wheel chair.  I want to help people understand that a person's handicap or illness doesn't have to be obvious.  Don't be narrow minded or shallow.  MS is very difficult to diagnose most of the time because there is a giant list of conditions that mimick MS.  A lot of research is being done and even if we never find a cure, we will be ok.  God is in control.