i agree it seems like a big guessing game. and a game is very dangerous when it involves drugs like tysabri. I really want to take control of our health and not just accept medicine in the palms of our hand. for now i will research and keep my mind open and question everything I am told by the neurologist.

of course every body is different. If you're sister wants to avoid drugs for now then by all means let her take a drug-free approach. Its her choice. I wish we would have had the balls to try alternative drug-free methods first, but of course it (diagnosis) all happened so quick. Tysabri is hardcore.

i missed last weeks infusion due to catching a bad chest cold. not sure if i want get it right away, i'm feeling ok, but i have been having lots of skin infections popping up literally in random spots like my scalp and hips, and top of left foot. maybe i will give my system a month to clear out...

this thread has really helped and i've read a lot of the recent posts. but it is a huge decision. i went on avonex almost immediately after official diagnosis but just recently learned that i have spine lesions (2, possibly 3). my neuro feels it's good to be agressive and switch up to tysabri...i can't decide, but i'm so glad you all are out there sharing your experiences/trials. in the alternative, he wants me to switch to rebif...even that sounds like not too much fun (avonex usually does make me a little sick for at least a night--would rebif be 3X as yucky?)...

after first diagnosis i have had a few new brain spots...but i went almost 3.5 years without the spine stuff. in fact, i think it may have been had spine issues before (that weird tingly feeling)

anyhow, thanks for being here and i'll keep on reading ...

I wish you the best in whichever Med you decide, Volada..

3 months without and I get to go in today to restart my infusions. blah. But, it will give me the $7500 bill I need to get my insurance re-instated and that part will be taken care of until Dec. Then my medicare will kick in Feb 1. Hoping my PCP comes back before the UTI and Sinus infection hit like it does every time I get the infusion. Wish me luck.

i ended up having last months infusion, i got them to include a bit of benadryl in the iv. holy smokes that knocked me out! i still had a couple itchy episodes the next day, they only gave me half the prescribed dose. does iv benadryl always knock you out like that? next infusion is on 9.19

Clarkstar:

After an allergic reaction on her 18th infusion, my wife was told to take a 25mg dose of Benadryl at home an hour before her infusion. Then, the infusion nurse gives her another 50mg of IV Benadryl along with 125mg IV Solu-medrol (a steroid) before beginning each infusion. That combination has done the trick regarding allergic reactions - although it does make her so sleepy that she has to take a long nap after each infusion. She had infusion #48 today.

I had #30 today. Yahoo!! I have been going every 7 weeks but went 8 weeks this time because I caught that nasty stomach flu floating around. I now have 2 teenagers living with me full time (unexpected change) and one of them got me sick despite my best efforts to stay germ free.

Today there was a new nurse and she blew one of my veins the first time and then had to stick me again. Ergh.

I have an appointment with the neurologist in Oct. That will be about 6 months after I tested negative on the JCV antibody test. Anyone know if it's commercially available yet? I know my neuro suggested getting re-tested every 6 months. I pray I'm still negative because I love my Tysabri!

Hi guys

I am coming up to three years on Ty next month. I love the way it works for me, but it is getting harder and harder to find a vein that wants to play nice when they try to put the cannula in. It took five goes in different places last time.

It is like they shut down and disappear as soon as I get to the hospital. I make sure I get lots of fluid before I get there, and sometimes I sit on my hands/arms or run them under hot water to try and bring them up.

I would appreciate any other suggestions if you have them.

Thanks

Lyn