Written By Stuart Schlossman – February 22, 2010
Albeit, I was not confident in having to make the decision to try this medication that has many questioning themselves and their doctors.. Many negative rumors, yet so many positive things to say of it, that there are many websites, bloggers and facebook fanatics (fans) who often voice their opinions..
And so, now there will be another opinion to read. Mine.
This is about the MS medication called: Tysabri® (Natalizumab).
Sure there are many that are going to read this, that may still not be convinced. I just want to say that I am not trying to convince you of anything, and nor am I getting paid to promote or write what you will see below.
Like so many others, I have an opinion to write.
Like many already know of me, from past opinions and how I have treated my body with medications, many know what I have gone through in the past and for those that want to know more, just click and read the About Stuart link found on this blog.
Enough rubbish, let me get started…
My Tysabri experience thus far. – I will soon be having my fourth infusion and I greatly look forward to it. Sure it is more time consuming that just doing a shot, but it most certainly puts less piercing holes into my body. Instead of having to inject once a week, daily or 3 times per week, I just need to be infused once every 28 days or 13 times per year versus, well you can each do the math on how many times you may need to pierce your skin.
I want to admit The amount of increased energy I have had. Allowing me to do that much more for myself, my family and for my MS peers (via my website, my ms blog, my weekly ms e-newsletter, facebook, twitter and arranging programs). YIKES, yes, just reading this could make you tired. But I wonder if for those also doing “T”, if they feel the same as me and are reading this differently than those who are not using this medication?
Aside from Increased energy, I have More Vitality, Clarity (clearer thinking ability and thoughts),
better ability to “reason” or add or decipher situations. Feeling more confident than even my normal arrogant confidence. Yikes – LOOK OUT world!! Yes there must be some humor with this too as just a few months ago, I did not think this was possible: to feel strong again.
My balance and gait are better and my cane is sitting idly on the back seat of my car, asking when he’ll be used again? Yes, I can hear it talking on occasion, especially when I am getting ready to enter a large store. “Nope” I tell it. “I am not needing to use you today”.
I am feeling more complete, more whole as I did, years ago.
I want to: do, do do.. But this too, is not good, because ‘I over-doing things’ and this is taking away from the good that this medication does for me. Yet still I have that much MORE desire To DO. Know what I mean? This 51 year old guy is feeling forty. Maybe thirty-nine but I will say forty for now.
Would I like to run a triathalon? Sure, but will it happen? No. Only because I was never a runner. Do I have desire to play Rugby or Lacrosse? Yes, but these too are not going to happen, but the desire is there.
I am Absolutely not ready to sky dive or do some bungy jumping. So if I say I do, it would be indicative that something was wrong with my mind… Take me to my doctor and say, he “isn’t right”.
Now let me get serious:
The bottom line for me, came when I realized I was using my cane almost all the time and when I realized that I was becoming acceptant to the disease progression.
Why was this? Why was I just accepting that MS is a progressive disease and I will worsen?
When I was first diagnosed, the neurologist I was seeing told me that he did not want to put me onto an ms therapy because the side effects were worse that the stage of the disease I was in. That we should wait until things worsen and then consider a medication.
Yea sure, I was going to wait until I got worse? Learning that the damage done to the myelin could not be reversed and I should wait? No way. I found another doctor, more aggressive in treatment regiment and before leaving his office he was putting me onto a DMD (disease modifying therapy).
And so, when thinking back to that experience many moons ago, I asked myself are you going to wait or are we ( the “royal we”) going to be aggressive again.
And so, I opted to try this “T” Therapy. Having learned that no problems (PML) have been found in any ms patient during the first year of treatment therapy, I opted to give it a year to see what happens and then to re-evaluate at the end of year one.
Maybe more will be known of the dreaded JC Virus. But this, I try not to think about and instead, think only of the good that I have been feeling these last few months.
Good timing too. With summer coming around the corner, I now have the desire and energy needed to go swimming when the weather warms up my pool. Last year, I didn’t even have energy to go for a swim and now I look forward to doing laps. And soon will need to do some real gardening that I have not been able to do the last few years or maybe even re-begin walking (more than a mile a day) as I once did, prior to three years ago.
Another admittance: Although I have more energy I still need periods of rest as fatigue, albeit much less than prior, still does occur. My mind and fingers admit that after writing this essay, it’s now time for a rest…
The point of this message is to confirm to myself, why I decided to accept the “T” medication to give me back some Quality of Life, rather than just accept disease progression thus allowing life to go forward without me…… As I said earlier: Nope to my cane and Nope to not living with some QOL.
Have a good day…And remember that this blog posting was just, me venting…
If you would like to reply to this message by leaving a comment, I would appreciate all to leave comments at this MS Blog posting. For those at facebook, twitter or the other sites that this will feed-to, come back to this blog and search for the posting by using the title of this post.
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