Tuesday, July 10, 2007


On June 27 I got my Tysabri infusion. Well, the next day, I was up at 6 a.m. and was so full of energy! That went away the next day. BUT, I felt really good for 10 days!!
I had some symptoms, very light, and then on the 10th day, I was really not feeling well at all. I was dizzy, stomach problems, hand not working, and etc. I looked at my calender, and it was exactly 10 since my infusion!! I couldn't believe it!! I asked my infusion nurse about it, and she said that she had heard from several of her clients that between 10-12 days the effects of the Tysabri seems to wear off.

But, hey, that's not bad! This time, I still had the burning in my face, and some shooting pains in my legs, but not the constant pain. So GOOD NEWS!!

I also bought a "Cool Shirt" and wear it daily in the heat. It really works!!
I am so happy with it! If you go to the website, you can order the shirt in a t-shirt or the poncho. If you call, I talked to Dave and he was so helpful!


mdmhvonpa said...

Hey there ... I'm a non-medicated MS afflicted fellow who saw you posting over at Laurens blog. How is the treatment going for you? Are the medical staff attentive?

Cyndee said...

I couldn't take any of the ABC drugs either. I tried but with no results. So, if you are thinking about trying some treatment, try Tsabri!! My mother has MS, I have it, and my daughter, now in her 30's shows some signs of having MS. I want her to go to the Dr. and get started on Tysabri.
My doctor is a MS Specialist, and they all treat me well! I haven't had to talk to the "Touch" people at all.

Herrad said...

hello cyndee,
found you via lauren's blog. been reading about your tysabri experiences. i heard i have ms since july 2006 but with hindsight think i have had it for 24 yrs. another mri next monday hopefully the prof at the VU (amsterdam) will now be able to give a second opinion.so far only on baclofen and cannabis. don't think tysabri is for me as i either have primary or secondary hope to know more soon.
by the way what a lovely photo of you and Lauren.
take care.

Cyndee said...

Thanks for leaving a comment Herrad!
My MS doctor told me that I have had MS probably since I was about 30 years old and I'm 59 now.
I was diagnosed in 2004. I have always had different symptoms, but just thought, it was something else. Until I had symstoms that didn't go away for 2 months. Then had a special MRI and it showed 4 lesions on the frontal lobe.
My Mother has MS, not a bad case, she's 83 and still going strong, no assisted walking devices. And my Daughter is showing some signs. If she was ever diagnosed, I would have her on Tysabri right away. If you think about it, your chances of having exascerbations are cut to like only 70%, the other ABC drugs are only 32%. So, she might never get any worse than she is now.
I don't have any affiliation with Tysabri, None!
But so far, I have not had an exaserbation since taking it. Which is all that matters. I don't take any pain medication either.
Let me know how your next appt. goes.
Cyndee P.S. sorry for the spelling........