Just an FYI for those of you who were not around for the initial release of Ty, premedicating with tylenol and benadryl was part of the original protocol. I am wondering since it was on the market for such a short time (3 months), they didn't see any reactions. Now that's it been on the market for a longer period, they've seen these reactions and are going back to the original protocol. Just my thoughts on this...

Glad you are doing better Joelle and have had your second infusion.

I'm in with my infusion appointment set at last. I go in 3-18 at 10am for my first. I thought it would be another 2-3 weeks b4 infusion, but my main nuero had a fit at the infusion neuro center and I'm in Tues. Now, I just pray nothing goes wrong and that ty works for me. I'll keep you updated on how things go. ~Sheena~

Joelle - congrats on 2nd infusion.

Sheena - I am VERY happy for you!! That is great news - and I hope it all goes well.

Well - just want to report that I'm still being messed around with by infusion center AND TOUCH people.

As of Wednesday morn, I was told that my info was sent to another infusion center and that I should be able to get in within a week or so. So, I called this morning - told by TOUCH that it will be longer b/c now they need to re-apply for something at the infusion center re: my insurance. I asked if this was started and he said no!!

Called infusion center - they told me they had NOT received my information or paperwork from TOUCH - and that they hadn't started anything!!

At this point, I just started crying - that was at 11am - it is now 5:37pm and I've been crying most of the day. Unable to call TOUCH back b/c I'm afraid I might totally lose it with them. I nearly chewed off someone's head today. Had to cancel my work/clients because I just can't do this.

I can't deal with this.

Oh - and I had asked TOUCH would I need anything else - anything else I can work on, etc. They said NO. Infusion center said otherwise - that they needed all my medical records, etc...but they weren't even going to request them until they had my paperwork from TOUCH.

I called my neuro - and asked them to go ahead and send my records now instead of waiting. They said they would...but I guess we'll see.

I'm besides myself. I really don't know that I can do this. I don't have this fight in me. I cry every time I speak with TOUCH. Well, first I get aggravated and angry, then I just feel defeated.

What is amazing in - this isn't even b/c of insurance stuff!

Still can't get MY case manager on the phone at TOUCH.

I have a friend in my telephone support group who filled out her T paperwork two days before me and she had her first infusion last week!!

The stress of this is just putting me over the edge. Actually, it's more than stress - the upset and everything else. Like I said, I don't have this in me - I can't fight the MS and the drug company! I'm too tired - I'm stuck in this exacerbation - and rather praying it is an exacerbation and not just progression. I haven't felt half of my head since Dec 22. The other symptoms also stink - and I don't mean to complain but I don't know how to do this any longer - or if I even can.

I'm beginning to wonder if I'm imagining all of these calls that I'm making? Am I speaking English to these people? Do they understand a word I say? Maybe this whole MS thing really is a bad dream?

I just feel so done already.

keri

Keri

Oh for cripes sakes. I still cannot believe what they are doing to you....use those email addresses I gave you and shoot off an email.

This has gone beyond ridiculous. Don't be messing around with your case manager...ask for a supervisor. And don't take NO for an answer. Your case manager is obviously NOT doing his job. He should be fired.

I have a partial list of authorized infusion sites and Biogen Reps. I need to know what region you are in ...

Thanks for the update Joelle! Been thinking about you!

Good post and good reminder! I had forgotten about this and now when I say it I will remember that it WAS in place at the beginning!

Happy to hear you finally got your infusion date Sheena! Please let us know how it goes!


Keri!,

This has gone beyond anything I could take. I would be screaming at everyone on the phone too! I hope you know we did what we could to bring you to the attention to the proper people. As Av8rgirl said- USE THOSE NUMBERS!

I did get a reply saying your info was being forwarded to someone who could help you, but obviously it hasn't worked if you haven't heard from them!