Tysabri Round 2 and Photoshoots

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Sorry! I disappeared again, this week was rough but not because of my MS. I had a bit of an ear thing going on but I went to the doctor’s today and it’s all better! So anyways, much catching up to do… Monday was my second Tysabri infusion! That took up an entire day, the ear thing just made me miserable, and oh yeah, I have some photoshoots lined up, so that kept me busy this week because I had to fix up the ol’ website after all!

First, let’s go over Monday, the Tysabri infusion. So I saw my neurologist right before my infusion and he was impressed with my recovery progress because “the Tysabri has not even really kicked in yet”. So that made me happy! He put me back on Baclofen for spasticity and is sending me another round of ACTH so hopefully between all this I can improve much more! It’s crazy how far I have come this year, I remember feeling hopeless, but all it took was a new doctor, nothing extreme, and now I am like a million and two times better! I want to send my old neurologist a letter, she said “How ever you are in 6 months is probably the best you will get”. Yeah, ummm… WRONG!

So I walked into his office without a cane and knocked out all the usual tests with no problems. I think he said that I am at about a “2” on that disability scale now. I forget the name of the scale but “2” is “Full Ambulatory / Minimal Disability in 1 Functional System”. It sounds like he expects to get me to a “1”, “0” is “normal neurologic examination finding” and I doubt I will ever be there again, but a 1? That would be more than I ever could have imagined! A “2” is great though, Considering I was around a “6” or “7” before!

So the infusion went well, 5 minutes on Benadryl, 1 hour of Tysabri, then a 1 hour observation period. I can’t wait to not get Benadryl and no longer need that observation period. I don’t like being sleepy and I don’t like sitting and waiting but both at the same time? Drives me nuts…

The first time I got that Benadryl it knocked me out but this time? I did not fall asleep really, not till I got home and ate… then I realized I was exhausted and I knocked out. I pretty much slept the day away. Then for the next few days my ear was bothering me and I was just tired… I got my ear “irrigated” today and now I feel good! Two days ago I smashed my heel with my chair which hurt really bad but now it feels fine! Yesterday I needed to be outside so I dug up the base of a Bird of Paradise Tree in our backyard. It was in there good but I got it out and it is so nice to not have an ugly dead trunk sticking out of the ground!

So yeah, I have been trying to keep busy and since I went ahead an booked a few photo shoots I have been really busy! I had to redo my website which took for ever! Why do I always forget how much I hate HTML?? The website is pretty much done for now and I have 2 shoots and a wedding between now and the end of February, so this will pay for some of my trip to Ireland and a new camera since my old one… well… it has seen better days haha. I never thought I would shoot again yet here I am booking shoots. Who knows where I will be in another month, 6 months, 1 year! I look forward to this all!

13 Responses to Tysabri Round 2 and Photoshoots

  1. Anonymous says:

    Cool 🙂

  2. SarahD says:

    🙂

    Awesome!

    I have the Tysabri illness PML so in about 6-12 mos. I am going on the oral medication!

    Matt, thx for blogging! It helps so much

    Ttyl.

  3. Matt Allen G says:

    Wait do you HAVE pml or did you just test positive for JC??

  4. Anonymous says:

    I'm glad the tysabri is working for you or at least you believe it will. My husband had those injections for 4 years or so and was eventually taken off because of the pml issues. He now takes capaxone injections daily along with baclofen, miripax and Zoloft. Good luck and best of health!!!!

  5. Matt Allen G says:

    Yeah I started on Copaxone then moved to Rebif but I just kept relapsing like every month. Now not so much, so i hope it keeps up! Thanks!

  6. Dore Family says:

    Great blog! So glad the new med is working for you.

  7. Larry says:

    Hey Matt! I've been watching you on youtube. Glad things are going better for you. I've been playing with vitamins. I feel so much better! Have not found a MS med that helps here. Also see some of you'r pics nice!

  8. Matt Allen G says:

    Yeah took me a while but Tysabri seems to be good for me, check my post tonight, I did a lot today, so tired! Haha

  9. Shari says:

    I have been taking Rebif for the past 8 years and it's not doing anyhing for my relapses, I've also done many rounds of plasma-exchange and 6 months of chemo. Now my doctor wants me to start Tsabri. I'm really unsure with all that I've read about PML risks and other things…What do you think? Thanks, I'm so glad I came across this blog!

  10. Matt Allen G says:

    WELL, I used to be that way to, "Why would anyone take that risk?" I get it now. Even though I think the risk is not as high as people work it up to be, I would rather live even just 5 years like THIS than 50 years like I was. To me it's worth the risk and they check up on me all the time to make sure I am not developing PML, if I am, they should stop the Tysabi in time to stop the PML, then, it's on to the next drug. I hope that day does not come because I am doing great with Tysabri! Best decision I ever made in the world of MS!

  11. Anonymous says:

    I was diagnosed last May 2012. was on betaseron for 6 months but started having hives and bronchospasams and was taken off Jan 14 2013. I decided to take tysabri. first infusion is Wednesday. Hope all goes well. Im scared about the infusion and the PML. I havent had a relapse at all. I hope i never do. I pray that everyone out there has a blessed year.

  12. Matt Allen G says:

    I was having a relapse bad enough to send me to the hospital just about every month. Since Tysabri I have not had ONE flare. PML is not as common as people make it out to be. They will probably check you often so if you start developing it they can catch it in time and hopefully make it go away I presume haha

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