Many of you know, that I too have MS.. Yea that's right, Me. Many have wondered over the years and many just do not want to believe that this lives within me. Yes, I am always trying to do (often too much) and because I seem to push myself too hard, I often have setbacks. Some much worse than others. I am sure that many of you, living with MS, know what I am writing about.
I began using a cane much more often than not, several months ago and after an incident that lead to a wrist injury, I use this cane that much more. But why? What do I mean why? Yes, why am I comfortable with using a cane to go forward with my life. Why have I just accepted to use this, rather than try a medication that may allow me to not have to use this cane? Why has it been very difficult on me the last year thinking clearly and why have I just accepted this, as being MS?
Yes, WHY have I been just accepting everything? I did not do this when I was first diagnosed and the Neuro wanted me to wait until I worsened before beginning one of the ABC meds (there was no CRABS at that time, only A, B or C). Instead I found another Neurologist who told me how important it was that I did not worsen.
Is there something else out there, that I haven't yet tried, that might alleviate some of these problems? The answer is "maybe".
Maybe it's time that I begin a new medication. And so, after wrestling with this decision for the last (10) months, I am ready. This weekend, will begin a period in which I need to cleanse (washout) my body from my current therapy, that I have been using since 'it' became available for sale in 2002.
I am sure, that there are those who have already figured out my next step (by what I have written or from what they already know of me) ... I will try this medication for a year and hope that I have less problems from my Multiple Sclerosis and what it has been "Not allowing me to do".
My new therapy will begin just in time for the holiday season. This is the Gift, I am giving myself.
Your comments would be appreciated, whether leaving them on this blog page, or on the facebook page where this article ( like all others posted to my blog) are technologically fed.
My question should be: Why just accept, when there are options...
Have a GREAT DAY.
Stuart Schlossman
written: November 12, 2009
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8 comments:
I wish you the best, Stuart! Please keep us posted on how you feel after the infusions.
I have been on one therapy or another since I was diagnosed in 2001. My first neuro was not proactive enough and I traded him for a new one 6 months into my first drug of choice, the second changed my meds up and to sum it up, I have been close to wheelchair bound, then graduated to a cane .. now I am free from any devices. My point being is try ... something! whether it be cleanses, diet restrictions or the simple ABC R or T or other drugs available. Do something for yourself as Stu has mentioned. Do it now .. don't wait! Tis' the season for giving ... give to yourself, you may actually be giving your life back.
I didn't intend for it sound as if it had to be a medication ... there are many, many alternatives out there, and many good neuros who support other options .. guess that is a gift you can give yourself also .. make sure you have the proper support in your journey, you don't feel good about what you're being told to do, speak up! It is your body ... your life.
Stuart,
I've been on Tysabri since March 2 2007 and feel great. My family thinks I'm a better person since I started Tysabri(I think so too!!!)
I wish you the best.
Take Care,
Laurie
I too have been on a few different therapies since being diagnosed in'92. All was well after started Rebif in 97?; condition changed in '06 and then went on Rebif + Cellcept. That didn't work and started T in mid '09 - after my wash out for ~3 months. 6 infusions to date. Not yet one of those (is it some, many or most?)that speak of T as if it were a 'near religious experience' or life before and after T. I'll stay on T also for ~1 yr. and if unsuccessful, maybe try the C. It's hit or miss.
Couldn't agree more about doing something NOW - drugs, diet, exercise, and mind/spirit
I'm so excited for you! My friend was on Rebif for a long time---he and I used to work together. He just had his second infusion of Tysabri and said he's already noticing a difference---his energy levels have even become normal again.
I'm so glad for you, and I know you've thought through this long and hard.
Welcome to the club!
My thanks to everybody for their comments. Please show my "awakening" to others you know, who are lost in decision making.
Best,
Stuart
Good luck with the Tysabri, Stuart. I hope that it is the answer that you are looking for. My husband was diagnosed back in 1995 at the age of 24 and since has been on all the A,B,C, & R meds, went back & forth a time or two, and now has been on Tysabri for the past 1 1/2yrs along with many other add'l meds along the way. He's on his 3rd neurologist and is basically self treating himself as the doc is pretty useless. So far, no noticeable improvement and hopefully we'll continue on Tysabri with no complications (I hold my breath with each infusion). It's nice to hear the successes, but some are just in limbo like my husband. I hope that it works wonders for you, don't give up the fight.
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