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Riverwild · 03-08-2008, 03:04 PM

Quote:

Originally Posted by RedPenguins

Well - the "story" is this -

My neuro's office used to offer infusions there - but their practice is so large - and they have over 80 patients on Tysabri - that they don't do it there, but use centers instead. I do have a hard time believing the local place is full - but it is possible I guess....I might try to call on Monday and see for myself. Of course, the local center is across the street from the neuro's office...which is also across the street from a major hospital. There is a chance it is full - but I guess that just seems hard to believe.

The rest of this email is kind of an angry rant b/c I'm so upset and feel so broken-spirited and defeated.... just needed to write it I guess....and hope that maybe someone can relate a little.

Today I finally think I made SOME progress on this whole Tysabri journey....I've been trying hard NOT to call and bug my neuro's office or the TOUCH people - but now I am seeing that if I don't follow up on everything - nothing happens. First my neuro's office sent in all of the TOUCH paperwork w/o the doc's signature.

TOUCH told me they had contacted the doctor and were waiting. Well, for some unknown reason it took 2 weeks to get the neuro's signature on it.

I saw neuro today actually - and was informed that the person who was handling all of that stuff is no longer with them (aka: she was fired for not doing her job correctly).

Called TOUCH today to see where we were with insurance - as they finally received the doc's signature last Friday. So the woman rattles off my benefits to me. I knew my benefits - I could recite them to anyone by heart now. She then told me that the ins co requires prior authorization. I was dumbfounded - and was just like - um - isn't that what you guys were supposed to be doing for the last week?!

She told me that the doctor's office does it. Ugg. So I called the doctor's office (mind you - I was going in for my appt an hour later)....and they tell me - no, TOUCH does that. I said I just got off the phone with TOUCH - and they said it's medical stuff - the dr has to tell the ins co my medical stuff. She said no and to talk to my case manager - as this guy handles all of the neuro's patients. I called back TOUCH. I try to get my case manager - but that never seems to happen. I tell the person who was unfortunate enough to be on the phone with me (I was very upset at this point) - that my neuro's office said they were supposed to do it. TOUCH was very nice - and again explained the same thing about the medical stuff - which made sense to me! I call back neuro's office - and to be honest - I'm about 4 steps beyond upset and moving into angry - which I really didn't want - but it's just SO emotional at this point. Talk to neuro's office - repeat what TOUCH said - and the woman is like oh yeah - you mean authorization for the medicine? If I could have....well, it doesn't matter - but suffice it to say - I wanted to scream at her. I was like DUH - I just called and said that to you!! Grrrr. So she says she doesn't think they received the request from TOUCH to do that yet for me. To which I informed her that TOUCH faxed the info to them on Monday - everything all filled out - dr just needs to sign. She puts me on hold and pulls my chart - and said, "oh yeah - it's here" - Again - trying to remain calm...I ask if they planned on signing the form and sending it to Blue Shield or was it just gonna sit there forever unless I had called. She then told me, "Well the doctors have lots of patients." That was the lamest excuse I have ever heard - I'm sorry. I know the doctor has a lot of patients - but he must sign off on things daily! This was ridiculous.

I hung up the phone and just cried for 20 minutes. I didn't even think I'd be able to make it to the appt...I was so upset and just feel so defeated. And it's all "stupid" - b/c I cant start the infusions until next Friday (b/c neuro wants me clean from copaxone for a month)....but this process has been going on for 3 weeks. I guess my nerves are just beat - I know it isn't a big deal that I'm not on meds right now for the last 3 weeks - but it freaks me out. That - plus the fact that as I get closer to actually doing the Tysabri - I am nervous. Add to that that I've been in this exacerbation (which I don't know how they call it an exacerbation or flare-up if it's the first time it's happening!) - anyhow - been in this for 10 weeks. I was dx 9 weeks ago today and that is also upsetting to me. I have had 2 courses of week-long IVSM....and the symptoms get better for a week - and then they return and sometimes newer ones come, too. For me - it is a daily struggle not to feel hopeless all the time. Fortunately, there is a large part of me that is a fighter (which came out when dealing with TOUCH and my neuro's office about this whole thing)....but then there are times that I want to wave a white flag b/c I'm just SO tired already. I had my little breakdown for 20 minutes or so (and I'm NOT someone who cries - but for the last 9 weeks - I have cried)....and all I thought was "I can't do this...I don't have this in me." I hate feeling defeated like this.

Did make it to neuro's office. He asked how I was and I told him I was upset with him and his office. Then I went on to tell him how sick I've been for the last two weeks and am seemingly getting worse. He did full exam and agreed that I'm definitely declining.

Not so happy about that. He filled out the form for the insurance company and I watched as they sent it over to them! yippy. He thinks Ty is gonna help and may be my best bet now. I know it isn't a cure - and it won't fix everything - but I really have to keep functioning by believing that it is going to help me fight this awful disease.

Sorry I ranted so much....I just feel so awful...and I wonder if this "flare-up" is ever going to end and if I'll ever be able to function again even close to how I used to be.

~Keri

Keri,

I am sorry you are dealing with the incompetence of all parties involved.
You shouldn't have to go through this. I wish it could be as simple for you as possible. I was under the impression that things had improved. I know when I started, I had to do some major screaming to get things rolling, but that was a year ago! I'd forgotten what it was like to get the people at MSActivesource going. Your post reminded me and it makes me very angry that this is still happening.