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Tuesday, August 17, 2010

Shedding Some Light Onto My Cloudy Mind

Hello Family & Friends, I saw my neurologist yesterday and today. Yesterday he informed me that there were 2 new lesions of white matter on my MRI. He also commented that the MRI techs within the practice were the ones to see them. In the past he would have to take them to Saginaw for his MS MRI Expert to review along with himself. He also noticed the new tremor in my right hand. Well, new to him. I've been experiencing this symptom for a few months now. It comes and goes, but it has been coming out more often. Especially after physical therapy which is where I had been before my neuro appt. He asked how long it usually lasts. I explained that it comes and goes, anywhere from a few minutes to an hour or more. That it typically seems aggravated by stress, fatigue or overexertion. I told him I 'd just come from PT and had done alot of manual dexterity exercises so that was probably why he was seeing it. He wanted to see me the next day to see if the tremor was still there.

So I went today, and he observed the tremor again. Between the new lesions and the tremor remaining consistent, this met the criteria for a definitive MS diagnosis. Finally! Finally the words I already knew were true. I "officially" have MS. If you've been following my blog from the beginning in 2008, then you know I was originally told early MS or probable MS, but that I needed another documented episode of demylination to confirm definitive MS. My neuro is an MS specialist and the reason I chose him is I knew he would either be able to diagnosis me or would be able to tell me if it was something else.

Initially, I had a diagnosis of CIS or Clinically Isolated Symndrome. This can be high or low and I fell into the high category. If you place in the high category, that means you have had many of the symptoms for MS and lesions on your brain or spine. That you are most likely to receive a diagnosis in the future of MS. Since he had ruled out all other possibilities, I knew already in my heart that MS was my fate. Besides the early MS conclusion, my neuro has been treating me as he would someone in the early stages of MS. I take the Betaseron injections to help slow the progression, Provigil for the fatigue as well as the other meds to help with the symptoms. My neuro was always very clear that once he had the definitive clinical MS diagnosis, his treatment of me wouldn't change. He would treat me the same just the wording in my chart would change to reflect MS.

This only confirms what I already knew. It doesn't change anything for me. It may change things for others in my life. For those of you who hoped that the confirmation would never come, I'm sorry if this causes you pain. For those of you who thought I was crazy, or looking for attention...I was right. And if you don't know me well enough to realize I wouldn't be so delusional, well I guess that is your issue, not mine.

To be clear, Betaseron is an interferon that is supposed to slow the progression of MS. It is not a cure. It is not an exact science. It doesn't give guarantees. No one knows if I would've progressed faster without the injections or not at all. No one can see the future. All we know is we can try and make an effort to learn from mistakes, science and trust our guts. I don't follow my doctor's orders blindly. I make my own calls. Some of my meds I take as needed and others I follow exactly. I need to make the decisions that I feel comfortable with for my own health.

My neuro had suggested doing another infusion of IV steroids to get rid of the tremor, but he also advised me that we could wait a month and see if it resolves on it's own. He said it would be my choice. I decided to wait. While I believe the IV steroids can be very beneficial, I also know they have harsh side effects and I would like to limit my exposure. So I am waiting until the middle of September to decide. He also prescribed a med to take daily to combat the tremor. I have decided not to fill it. Right now it isn't particularly bothersome to me and I would prefer not to add more meds to my daily routine. If it changes then I will reconsider.

Some may feel that today is not a good day. And it probably isn't one I will celebrate. In my heart, November 2008 is when I got confirmation. Today was confirmation for everyone else in my life, medically, professionally, intimately...all who care for me in some way. Today was all of your light bulb moment. It was the moment to shed some light onto my cloudy mind. To finally see that this is the true direction for me. I will continue to face it with dignity, to remain positive and smile thru tears and laugh til my heart sings. MS will never break me. It may get in a few good punches, but I always bounce back. This will be no different. I am still me. I still will laugh, love and live because Tammy is who I am and will always be. My life is my own journey. It is what I decide to make of it. And I decide to make the most of my beautiful life. I wouldn't change a thing!

1 comment:

  1. Well heck I just discovered your blog, but I can't sit and read it just know. Struggling with "probable" MS myself. Will come back & read your story soon. Thanks for sharing your story.


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