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!

hi, i was just wondering how the tysabri is working for you. like with changes and with side effects.

i am suppose to make a decision between tysabri and copaxon and i dont know what to do so i am looking for info.

I have to say that the pml really scares me. did you feel this?

Thanks

Okay, I filled out my TOUCH papers today. I just had an MRI and bloodwork, so that shouldn't hold me up. My nurse said she'd fax off the stuff on Monday, and hopefully be approved sometime next week by TOUCH. Then they'll work on my insurance.

I just hope this is the right move!

After a year on Avonex, more lesions.

After the next year on Rebif, no new lesions, but I itch all the time, am tired all the time, and get frequent head-aches.

Not a lot of MS symptoms. Never had steroids. Just a tingly left hand, weird left side flutters (that have since passed) and lesions on my brain!

Hi CJohnston,

If you go back to page 1 and read through this thread from the beginning, you can read how people are doing on Tysabri. Everyone's different and there's a lot there from each side of the coin.

As for PML, over 24,000 people are on Tysabri now and no cases of PML have been seen in Tysabri given alone. Only you can decide what your risk tolerance is.

Read the thread and then ask specific questions, there's a lot of folks who can help answer them!

Hi 4boysmom!

Good luck! Let us know when you start!

Keri

I called Biogen today. No return phone call. Guess they all went home early today/Friday.

I hope you don't have to wait much longer or continue to get the run around.

4boysmom - Keep us posted on your progress!

Cjohnston - I can only reiterate what Riverwild posted. No PML has been reported since Tysabri has been released. And there is only one MS case in all...and he's still alive....and that was in the combination trials.

Ask questions, that's how you gain knowledge! Knowledge is power.

Vic,

You know I always love your charts are you posting them on the other site as well?

Hope your lines go back up again. Keep us posted please.

Chris had #4 and although I don't see much improvement we are blessed that things have stablized somewhat

I was thinking about Chris and wondering how he was doing! Thanks for letting us know. Glad to hear you are seeing stabilization!