My quick Tysabri Update:

Maybe this has nothing to do with Tysabri...but it is time to see my neurologist as:
1) my right leg/foot is starting to show signs of foot-drop
2) I am getting much weaker in my core abdominal muscles
3) Wall-walking is a daily event...or should I say, it is routine now.

Limitations to Assessment:
1) It may may nothing to do with Tysabri, as the heat index is soaring here in So. Cal., and we know what that can do to us...
2) Additionally, my exercise routine has been limited by too much desk work (ya' gotsta' make money, no?:D).

I have scheduled the appointment for the end of the month, when the temperature is supposed to be down by 20F and my workload will decrease. Those two factors may change the story entirely and I may find that the foot-drop issue, wall-walking and core strength will have increased.

This is actually kind of neat in an odd way. It is like waiting for an on-coming train...will it switch tracks or ...:eek::)

Time will tell.

At least I am not in Burma...;)

-Vic

Infusion #2 Today
 

I had my second infusion this morning. Again, I did not take any allergy or pain medicine before or afterwards.

I felt a litle spaced out during the procedure. I was also walking more awkward than usual, but this went away after about four hours. (It seemed like my left knee forgot it was attached to the rest of my leg.)

I have a little more energy and am feeling more optimistic than I was yesterday. Does anyone else feel depressed the week before your infusion?

Good luck to everyone and thank you for sharing your stories! Keep moving!
:winky:

Infusion #3 5-20-08
 

Infusion #3 yesterday - I'm scared - all went ok in ref to infusion. I predosed with tyenonl and ben. I've stayed on ben. since infusion. So far no sides as in past. But, I am in a major relapse with sx over 24hr. Walking, room going around... I have emergency work in at nero at 11:45 am Thurs. This one will not be fun.

I saw my neurologist this morning and we discussed these issues again.

Our conclusion is that it is the normal progression of MS and we both agree that it could be worse. Is Tysabri helping? Probably, but because of the nature of the disease and the medications, nobody really knows for sure.

The good news is that I am still kicking and that my biologists are have a great time working on our desert project (even the guy who got stuck because his 4-wheel drive transmission ate the dust on-site).

I think that additional exercise is a must.

-Vic

I had infusion # 14 yesterday. The usual - no problems, no concerns. The nursing staff all came in and cheered!

My neuro gave permission for me to have my July infusion two days early because I have an annual trip in July and I am not going to be late like I was last year! He refused to let me have it early last year because I had just started in May and he didn't want to rock the boat. He's more comfortable now, I guess.

The bummer news is that the other Tysabri patient isn't having good results. While the staff can't give me the details, they did say I may not be seeing him now, so he must have had some problems. I don't have any way to get in touch with him to check, and I am sad not to be able to talk to him about what is happening and comparing notes. :( I may be back to being the only one...


I am still recovering from the most excellent trip to the Midwest GTG, sleeping a lot. I went right back to work for two days, had the infusion on only 4 hours sleep, and slept like the dead last night for 15 hours.

Soooo...year 2 begins...:)

Hope everyone's doing well!

I had infusion number 1 yesterday morning. No problem........No effects what so ever. My second one is scheduled for June 19th.........Onward and upward, hope it all stays this easy!! Barb

2 infusions so far...and an exacerbation
 

Well, I had my second infusion on May 9th. No problems with it.

I think I started an exacerbation on Monday....called my neuro Wed night - and after leaving numerous messages, he just called me back (4:45pm - Friday- on the eve of a holiday weekend!). He does want to start me on IVSM...and thinks he can get it arranged to start tomorrow. I sure hope so - b/c the double vision and vertigo are kicking in big time. Of course, I would've preferred to start today or to have heard from him sooner. Oh well.

In the meantime, I'm planning on getting myself HiCy at Johns Hopkins. I think I will post about it on the main MS board here...

~Keri

ps/I hate flare-ups. This is technically my second one? First one started end of December - dx Jan - had first IVSM in Jan, second IVSM in Feb. It was like the flare-up that just kept going! Now it's back!! Uggg.

Please do post about it. The process, the procedure, and the drug. It's not regular Cytoxan, is it?

OMG what a great thread on Ty! Thank you all for posting and being a valuable resource. I am so happy for those of you for whom this drug has obviously made some great improvements in your QOL and outlook.

I am sorry for Barb having such a hard time being able to tolerate anything, at the moment. I hope the remylination research leads to something that will help nonresponders.

Vic you have sacrificed so much to fight the good fight!

My doc is working me up for Ty. You all have given me much food for thought.

I told you I would be thinking of you on that day and I was!

Of course I was asleep when you got your infusion after working all night but when I sat in my infusion chair and thought about the last year I suddenly remembered that you were having your first infusion on the same day! Glad to hear it all went well!

Let us know how it goes and how you feel!:)

It's June 19 for me too! I'll be thinking of you again!!:p