The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Tuesday, January 23, 2007

Some updated notes:

  • The 'roid rage has set in and I am an emotional wreck. I get really angry and cry easily too. I am trying to manage it though. Last night, I slept for about 4 hours, which I had been doing much better (unlike the first time I was on IVSM/taper). I hope this doesn't persist.
  • I got my Tysabri information in the mail yesterday. Let's just say the info is slim and it's basically what I can access online. The forms cannot be filled out until I am in the doctor's office. I am waiting on my MRIs so I can see another doctor. Yet, I still have lots of questions about why me and Tysabri? I am so "ms-lite" in a sense, particularly compared to those others I know with MS. But perhaps I won't stay MS-lite if I continue to progress. Really, I don't know.
  • The information that was recently left on Tysabri in my comments section was helpful, but if you read this again, a question--are you just a big fan/advocate for Tysabri or are you employed by the company to promote it? Because you are really enthusiastic about it, which is great that it's working for you. I just don't think there is one miracle drug out there right now. I do appreciate your input, though--let that not be misunderstood!
  • My neuro called on Friday (I don't think I've written about this yet and I am too lazy to check) saying he was suppose to call me to answer questions I had. Uh, I didn't recall that, but I always have something I can ask. Again, he promoted the Tysabri option as one of my few, if not only, option right now. He seemed pretty certain--not even tentative. On one hand, I am glad he wants to march forward. On the other hand, in the world of MS, I am not sure there is ever such certainty, so such certainty makes me nervous.
  • I get frustrated with everyone else who just doesn't "get it." I know this is a common issue and I am not alone. I was recently sent an article about how parasites in the water of some third world countries can help combat MS. I have been sent things about aspartame poisoning, supplements that have cured myriads of diseases, and told that if I would have only had more Vitamin B-12 as a child... People who saw me over the holidays have trouble grasping that I seemed fine and why now is the problem reoccurring. Someone else told me that once I started the Rebif, they thought it was all under control and that I would have it behind me. It has been reduced to "eye issues" and "leg issues," etc. I know it's hard to expect people to understand when I, myself, don't fully always get it. But as I live it and experience it, I don't have any real option except to understand or at least try to understand.
  • I had a bone density test and a hip x-ray just to make sure my bones are holding up in spite of the steroid treatments. I am still waiting for my results, but I don't foresee any problems. These tests were purely preventative and to establish my baseline so I can monitor these things.
That's about all, I think. Just a lot of craziness that seemed to all ball up at once. Fun times, oy.

2 Comments:

  • At 7:20 AM, Blogger mdmhvonpa said…

    'I get frustrated with everyone else who just doesn't "get it." I know this is a common issue and I am not alone.'

    This is an unfortunate situation. It's like explaining child-birth to a teenage boy ... you just don't understand unless you have been through it. Be tolerant though, wisdom comes with age.

     
  • At 11:48 PM, Blogger Lauren said…

    Hi Heather....were you referring to lil ole me in your statement: "The information that was recently left on Tysabri in my comments section was helpful, but if you read this again, a question--are you just a big fan/advocate for Tysabri or are you employed by the company to promote it? Because you are really enthusiastic about it, which is great that it's working for you." ??? If so,

    (laughing) no dear one, I've had MS for 31 years...I retired at the ripe old age of 47 due to my increasing disabilities. I've been researching and studying Tysabri (formerly known as Antegren) since 2000, and I had my very first dose in 2005 (before it was voluntarily removed, and 4 doses since Oct. 2006.

    "I just don't think there is one miracle drug out there right now." Well, in 2005, 2 weeks after my first infusion, my slurred speech was gone, my drop foot on the right was gone, my limp was gone, my optic neuritis was gone, my cognitive problems were gone, I put my walker in the closet and I used only a cane as my balanced hadn't returned 100% yet at that time. So I guess that makes me a learned fan/advocate for Tysabri (smiling again).

    This time around, however, I'm more severely disabled and in w/c now due to not having Tysabri's protection from further relapses for 18+ months, and I've only seen minor improvements thus far, and of course I'll always hope for more...but guess what?

    I haven't had one single relapse and no disease progression whatsoever since re-starting Tysabri in Oct. 2006..before that, I was having a relapse approx. once a month!

    So, for me, Tysabri is the closest thing to the hope of a cure, until a cure is actually found...i.e, Tysabri Equals Hope. We just never know when that bad relapse is gonna hit us out of the blue.

    "Also I do appreciate your input, though--let that not be misunderstood!"...Awww, honey, I know and I do understand, honest I do...and I empathize with all you're going through...take good care now,

    (((hugs)))..Lauren (smiling)

     

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