Catching Up

Wow, it has been over a month since I last posted. I should have alot to say by now!

Dr. Foley agreed to another Tysabri infusion under the condition that I test negative for Tysabri antibodies. I got my results on Friday, Sept. 14th and I am negative! I was so relieved to get these results. Not only was I nervous about potentially going back to interferon injections but I also received this interesting piece of information…

People suffering from multiple sclerosis who stopped taking the controversial drug Tysabri experienced a resurgence of brain lesions associated with their disease, researchers report.
While I think this is based on too small a study to make me nervous, it does concern me. You can see the whole story here…. stoppingtysabri.

The blood test for Tysabri takes forever, or so it seems. My results were back in 14 days and by that time my regularly scheduled Tysbri infusion passed by. I could really tell a difference in the past ten days with increased numbness and heat sensitivity. Here comes the good part….

I had my third infusion today! To avoid another reaction they pretreated me with Benedryl and infused over a two hour period instead of the typical one hour. I did have a mild reaction but nothing like infusion number two. I got very queasy and had the chills. Before they could get bad though, I received more Benedryl. Needless to say, I am exhausted now. As tired as I am and slightly frustrated that things weren’t picture perfect, I am thrilled to have another month of feeling good to look forward too.

In following Tysabri protocol, I will be doing some routine blood work in the next week or so and then following up with Dr. Foley before my fourth infusion.

I am reading a great book right now and highly recommend it if you are ready for a natural approach to healing. It is easy to read and the things that the author recommends would probably be good for anyone not just MS patients. Check out Healing Multiple Sclerosis by Ann Boroch amazonlink. I have picked up a few of her ideas but am not applying the entire process yet.

I’ve also made some progress on my 101 list: OriginalList

#4. Read one non-health related book per month. August – A Thousand Splendid Suns, by the Author of Kite Runner Sept – More than Enough by Dave Ramsey

#7. Save three dollars per day in addition to regular savings – still sticking to it.

#14 Floss Everyday for 50 consecutive days – I am on day nine.

#37. Learn Spanish – I am on the way. Working on CD 1 from “Speak in a Week”

#49 Workout with a trainer for three consecutive months – I am on week seven

#85 Institute monthly date night – Mark and I attended a black tie MS Event last week and this past Sunday we went to the Red Iguana (great Mexican Food) for lunch.

Only other news – I bought a great digital camera and am starting Photoshop classes in October. I put some new pics up on My Flickr Page

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6 responses to “Catching Up

  1. Happy to hear your Tysabi infusions are going well for you. Recently going on Rebiff, I now know why everyone hates it! Like your list too…Go for it!

  2. There is a reason they call it Rebarf!

  3. glad your infusion went better, and good work on the list!

    i’ve been trying to floss too but today i dropped my container of floss in the toilet! i better get to the drugstore soon so i don’t lose my flossing momentum!

    speaking of interferons, i’m switching to betaseron because we don’t think the avonex is working effectively enough. isn’t that great, considering i’m just about the only person i know who actually tolerates avonex well!

  4. hi Courtney,

    so glad they were willing to try the benadryl and the third infusion. I’m really happy for you. i was starting to worry just a little when you hadn’t posted for a while.

    i just had my 2nd one yesterday. I walked in and the nurse said “well, if you are gonna have a problem, today’s the day!’. She very kindly sat with me for 30 minutes. At minute 30, she said ‘ok, you are out of the woods.’

    i was thrilled to get through it. I thought I had a fairly good first month on T, and I’m looking forward to the next one.

    trish

  5. love your list. i am in need of one. or maybe i will just wait until january. lol i hope things go well with your meds. i have yet to start on anything and i am just listening to everyone’s stories.

  6. merelyme…thanks for your post. It is my opinion that early treatment is best. Everyone reacts or doesn’t react so differently to all of the MS therapies that it’s important to base your decision on what you discuss with your family and neurologist…(a good neurologist). The statistic that always sticks with me is….
    50% of UNTREATED MS patients with Relapsing Remitting progress to Secondary Progressive after 10 years. That changes to 95% after 25 years.

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