Your doctor should have explained it to you in detail, but I guess some docs just don't do that. It's not right that a doctor would expect you to just take what they tell you to without explanation! Ask questions and take notes when you go to your doc. Call if you need more information. You pay them and they should give you the service you need. Be proactive!
The clinic or infusion center should have returned your call, but I am willing to bet that they called you to schedule you for infusion and that the process is further ahead than you think. Call them back if they haven't called you back. Be proactive.
I've called these clowns 3 times and they haven't called me back. at this point i feel like telling them to f off. i actually have contacted mayo clinic and am going to try to start over with them.
As for Biogen (the pharma that distributes Tysabri) they should have contacted you by now with the name of your case worker (or whatever they call it now).
nobody other than that one call has contacted me. and i listened to that message again, and the girl just said, i'm returning your call. I've called 3 times since and nothing
When I was waiting to start, they called after a month and gave me the old "welcome to Tysabri" speech and I lost it, because they were supposed to investigate costs for me, give me the start date after my infusion center had been trained, etc and I hadn't heard from them at all. They didn't have it together way back at the start. I hadn't been scheduled, hadn't found out what the cost would be, etc etc etc. but that was long ago, after Tysabri restarted and they had to get their program in place.
What you need to know is that all they do now is ensure the infusion center is trained and approved, make sure that you are registered and make sure the drug is there for you. and I bet that is already done, since the infusion center more than likely has patients already on Tysabri.
My advice is to go to
www.Tysabri.com and register. There's a lot of info available there for new patients that may answer questions you may have. There's a good support system in place there now. Some people don't need it after awhile and some do and it is there if you need it.
thanks, i will check it out. i had once, but i'm unsure if i registered
One thing you said struck me. You are afraid you won't get any better. What are your expectations with this drug? It's important to understand that Tysabri is not a cure. It's designed to slow the progression of the disease and reduce the frequency of relapses. It doesn't cure you. You will still have MS and anything else you get out of it besides what it is designed to do is gravy.
i dont even know what type of ms i have. if its r/r its never fully gone into remission(of course it hasnt been treated) it seems like the clinic saw dollar signs or something in me, the only info i ever got on this disease is off the internet and speaking to one of my physical therapists who said his mom got it but now she's 100% back to normal. so i had been holding out hope that i would be the same. and actually my family members have been telling me that's the case, and that i just have to work at it.
Some folks have amazing results. Some folks just stabilize. In my case, the disease process has stabilized and I have seen improvement. I still have some spasticity and I still have fatigue but I treat those symptoms with other medications and I can live with that. My primary symptoms were vision and cognitive stuff and the problems that go along with that, and those are back to pre-diagnosis levels, but I would have been happy just having the serial relapses stop. I was having relapses every three months or so and my MRIs went from 4 lesions to "uncountable" in a very short period of time, and that has stopped too.
For some, it doesn't work at all, they develop antibodies and have to go off it. It's like the rest of the MS drugs, they either work for you or they don't, and you try something else.
Let us know how it goes for you!