Your thoughts...

[echo]

I keep going from very hopeful to very frightened about Thursday. We will see how I feel then =)

Who knows with the medications what is going to be out in a year...I might have more choices then.

[KatieAgain]

I keep going from very hopeful to very frightened about Thursday. We will see how I feel then =)

Who knows with the medications what is going to be out in a year...I might have more choices then.

I was so scared for my first infusion that I did not sleep, I got a headache, and I puked when they put the IV in...I missed the Nurse, thank goodness.

Being scared is normal. But after one infusion, you will be a pro.

Best of luck to you on Thursday.

[ru4cats]

Don't forget YOU are in charge of your infusion...your money...your choice. If there is a vein that is a particularly good one, then THAT vein is the one they should use. I have nurses that ask to use another vein, but I refuse. I had two bad experiences that resulted in bruising, and ever since I'm in charge of where the needle goes.

I use to be deathly afraid of needles before I went through 20 years worth of allergy shots. Then I was deathly afraid of my infusion needle, only to find out the new needles are really easy to take. Last Friday, I didn't even feel the needle go in.

I was extremely afraid of my 1st infusion also, but it went really well. I hope your's is an uneventful as mine.

A year from now, I'm quite confident there will be more "big guns" available to help all of us fight this chronic disease.

[echo]

So far so good. My 2nd infusion is next Thursday.

Only weird thing is ever since the infusion my lower eye lid has been twitching. It has moved to my cheek and now my chin and eyebrow. Its a constant subtle twitch but still visable. My neuro doesn't think it is anything serious he thinks its just lack of sleep. If it doesn't start to calm down by Wednesday I will shoot him another email. Its pretty annoying and its starting to effect my eyesight.

[cdsnov65]

I can only speak of my results with Tysabri. If I could be, I would still be on it. I had issues with numbness in my legs, and from about the knees down, I didn't feel a lot.

I was a little excited, as well as a little apprehensive about my first dose. As I am sitting in the chair and the IV is in, they hook up the medication and start to run it. I look at the time, and about 30 minutes later I started feeling some sensation returning to the bottoms of my feet. By the end of the week, I could feel my legs and had few residual symptoms.

I also am positive for the JC virus and have had almost 4 years of Tysabri. My neuro was wonderful about keeping on top of various lab levels, such as CD4, CD8, and liver functions. When they came out with a way to measure your risk using titers of the JC virus, my doctor drew a titer, and my predicted chance of PML and dropped from 1:10,000 to 1:125. Being that I have a family, I called it quits for Tysabri. Had it been just me, I would've taken the chance.

If they haven't drawn titer levels, it is available, and can be a great predictor of your chances of acquiring PML. This may help you make that decision. I hope this helped.

Chuck