Wednesday, October 2, 2013

More than MS

I am glad I got a comment that reminded me that I am more than MS.  It doesn't have to consume my life, my talk, or even my blog!  : )  I will use this blog to update any medical things going on in our family due to MS but as this flare-up settles down I am wanting to continue this blog for more.....not sure for what more yet!  : )

That being said, I do have some "medical" things to update.  The spinal fluid did come back with the MS proteins, so there is no more waiting to make sure I have MS.  It is official!  Because it is official I have to start MS medication.  After researching them....considering their effectiveness, years of research, amount of damage done to liver/kidneys, cost, side effects, etc.,  we have narrowed it down to two.  One is a daily shot injection called Copaxone.  It has been around for over 20 yrs, no damage to liver/kidneys, and has mild flu like side effects.  The second is a monthly IV.  As awful as this sounds I can not remember the name...it starts with a D.  : )  I would go in once a month for 2 hrs and the first hour is for the IV, and then they have to monitor you an hour afterwards because I believe you have some flu like side effects as well.  Now the IV is also twice as effective as the Copaxone, which is another reason I like it....plus no daily needles for me! : )  Here is the hangup with the IV.  60% of us will contract a virus in our lifetime called the JC virus.  It just feels like you have a cold, and then the virus lies dormant in your brain.  The medicine in the IV actually causes that virus to "awaken" and that cause serious brain infections and possible death.  So I have taken a blood test to see if I carry this virus.  If I am positive I have will remain on the Copaxone.  If I am negative we will go through the process of starting the IV treatment.  This may take a month or so, so either way as soon as my Copaxone comes in the mail I will begin my daily shots.  I will then have blood tests done every 6 months to check and see if I have the JC virus, since I can still get it in my lifetime.  Sorry if that was confusing!  : )

I want to also add this amazing song to this post.  A sweet friend blessed me with this and I think it is amazing!  : )  I want my trust to know no borders!



4 comments:

  1. I'm not sure if congratulations is the right word to use, as far as an MS diagnosis. But, congratulations for ending the "questioning phase"... There aren't any MS modifying medications that start with D. Tysabri is the one that is through the IV. Just thought I'd let ya know. :)

    Ila from http://www.hehasms.com

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  2. That is so funny, you are right....I thought he said Dysabri! hahaha That makes me laugh! Does your husband use this one? I do not have the JC virus and have to decide this week which one.....still a little confused....

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    1. No, not tysabri. Marcus has used Copaxone in the past. For him, he had rather unusual side-effects that weren't typical. He seemed to have an allergic reaction supposedly to the Copaxone. He was switched to avonex. That wasn't too bad.

      But, he chooses to be drug-free. He doesn't use any MS modifier at the moment, and hasn't for a year. He regularly takes supplements of various forms [especially Omega-3 & 6], bee pollen in smoothies, and testosterone supplements. He feels MUCH better, is even working again! He still has MS, obviously, but he is managing his symptoms much better. I should do an update post on my blog about his MS because a lot of people who read my blog are MSers or MS caregivers.

      Anyways...

      Copaxone has the least amount of risk, especially as far as liver damage. That is why we initially chose that one for him. However, there are injections every single day. & site injection spots tend to STING really bad, like a wasp sting. Also, it usually comes with flu-like symptoms in most cases. Is recommended to be done before bed (to sleep through the flu-symptoms). This one is injected into the muscle, which can be a bit painful at times & can make that muscle sore. This one comes with a Auto-injector too, but the fear of the sting makes it unlikely that you will want to press the button.

      Tysabri is easier, because it is through the IV, and is only once a month. However, it can have MORE liver damage. Marcus was terrified of Tysabri for this reason.

      Avonex- that was the best one for him. It is still a shot, but not DAILY- it is only ONCE A WEEK. He preferred that, also- his site reactions were minimal. There was less pain during the injections, because it is injected under skin into the fatty tissue, not into the muscle. This one comes with a self-injector that you can set to make sure you don't inject into the muscle (which is painful, by the way- marcus did it once). Avonex has more liver damage possibilities than Copaxone, but less than Tysabri.

      If you haven't checked out this link at the National MS Society yet, please do before making a decision. It is full of information about treatment options, and you will be able to make an informed decision. :)

      http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx



      If you have any questions or just want to talk, feel free to email me at hehasms@gmail.com

      Ila from http://www.hehasms.com

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  3. maggie.danhakl@healthline.comJuly 4, 2014 at 3:21 PM

    Hi,

    Healthline just launched a video campaign for MS called "You've Got This" where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS.

    You can visit the homepage and check out videos from the campaign here: http://www.healthline.com/health/multiple-sclerosis/youve-got-this

    We will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets the more the videos we'll receive and the more Healthline can donate to MS research, support groups, treatment programs, and more.

    We would appreciate if you could help spread the word about this by sharing the You've Got This with friends and followers or include the campaign as a resource on your page: http://mymsmymightysavior.blogspot.com/2013/10/more-than-ms.html

    Please let me know if this is possible and if you have any questions. And, if you know anyone that would be interested in submitting a video, please encourage them to do so.

    Best,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

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