My phone is being blown up by the countless cals from my neurology office. They want me to sign up for financial assistance through Biogen Idec for my Tysabri infusion. I missed last months infusion because of the insurance fiasco that I am still trying to get straightened out.

BUT, I feel great! Better than I have felt in years. DH2B asked me last night how I am not tired after all of the running around I have been doing. And my response was simple; there is a lack of poison flowing through my veins and I wasn't forced to be sick for 2 weeks.

Now here is my issue. The docs are adamant that I get my infusion. Understanding that Ty is the only thing that has worked to slow down the progression of this disease since i was diagnosed, I agree that I should be back on it. But there is a problem with getting it approved through Biogen that my doctors are not quite getting.

The financial assistance would only cover the infusion. It does not cover the neuro, the primary care, or the other things that I need. It does not cover the other meds that I am out of, nor does it cover the mandatory follow up with the PCP nor the antibiotics that I will need the week after the infusion. This isn't a "maybe" I will need this. This is a every single time I have had the infusion I have ended up with a sinus infection, inner ear infection, and a UTI. It is like clockwork the week after the infusion and te reason I schedule a follow up at the same time I schedule the infusion.

Why can't my neuro understand how this works?

Maybe he just needs to see it on paper. I would write it all out for him, listing all the follow up and meds and such that you need after the infusion. You can even list costs if you know them. Then bring, fax, or snail mail it to his office so that he can actually see it. Sometimes that helps.

I'm sorry you have to put the fusion on hold for now, especially since it has been helping you. Hopefully, you can start up soon.

IMHO....they're just covering their rear ends. Something to document in your medical records stating that they did encourage you to continue on Ty just in case you do end up with a bad exacerbation. It's in black and white that they tried to get you to take it.

My Neuro is doing the same thing. Putting the statement "patient refuses to take DMD's" in my records numerous times. I told him that the low percentage rate for possibly reducing the duration of an exacerbation is just not good enough for me to keep putting that poison in my body. Of course, that statement is nowhere to be found in my records.

I kid you not, no sooner than I hit send on this thread my phone rings. Seems my doctor took it upon herself to contact biogen on my behalf and gave them my phone number. Now they are calling me too.

Is it wrong that one of the reasons I don't want to go back on this drug is because I don't like being harassed?

(((((Leggs)))))

That sort of sounds like a breach of patient/doctor confidentiality to me. I wouldn't want my phone number given out to anyone without my prior knowledge and consent.

Turn off the ringer, stop answering the phone. Talk to the NURSE that is charge of the MD office and explain to her what you are talking about. either she will get it, or she wont.

Tell Biogen DONT CALL BACK I will call you once I have this straightened out with my md. till then, YOU are stressing me out, so STOP!

Then...get on with your life. Once it all gets figured out, go back on TY. Till then you cant do it half way. you need the WHOLE ball of wax, not just the wick to light the flame.

3 calls from my neuro 1 call from biogen and I am one unhappy camper. I explained to the nurse the infection issue and I was told to stop making excuses and asked if I would rather be in a wheelchair or deal with a little infection. I told her I would rather speak to the doc from now on as she was obviously a moron with no experiencce in handling this disease.

What a turddddd!!!!!!

boy, something about all this harassment rings of lawyer to me too.
it is just plain wrong.
i like tkrik's answer about putting it all on paper, including all your costs.
sign it and send it to the dr. they will have to put it in your chart. that may counter your dr's negative documentation. and ask to see the chart to make sure it's in there.

i don't want you to be sick but that's a lot to go thru for this med.
and, i'd send it to biogen too.