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RedPenguins · 03-19-2008, 11:00 PM

Hi Sheena- I'm so proud of you for going thru with it!! Congrats. Glad it went smoothly. I'm also jealous at how fast your process to get the Tysabri went for you!

Macia - it might be me you read about who was having trouble. I'm hating the TOUCH people. Actually, I'm hating everyone and everything right now. However - I'm sad to hear you have such problems with the Ty - and I admire your willingness to keep going with it. Also - why don't you go for a second opinion - it sounds like doc isn't always listening to you?

Well, everyone - I'm still struggling to get the Tysabri. I haven't been around here b/c I have been SO depressed and upset since last Wednesday. The runaround from my doc's office and the infusion centers and TOUCH just made it all so unbearable for me. I finally just let go and didn't do anything b/c I couldn't handle it. I don't have the energy or fight in me - and really, I planned on calling it "quits" permanently, so to speak. Thursday I was so close to just ending it all. I'm still struggling with this - but made an agreement on Friday night with my two close friends (basically they are my family and all I have in this world) - that I would wait and try the Tysabri once and see how it goes before making any "decision" about my life.

Well, on Friday it semeed that TOUCH had found me an infusion center that would be able to take me this century

and paperwork supposedly sent off to my insurance company. I was still totally depressed and a wreck - but just kept hanging on.

Had a lousy weekend - and Monday rolled around and it all started again - got a letter from my insurance company - who said they wanted further explanation of why I haven't tried the interferon treatments - and if it was contraindicated, they wanted to know why. Well - this should all have been in the stuff my doctor sent over. I called the doc - and they were unhelpful as usual

I made it clear that the doctor needed to have a letter written to the insurance company ASAP. Called on Tuesday - he hadn't done it yet - but they actually put me on the phone with him. He said, "Oh, i thought i did that all when I sent it in?!" - I told him the insurance company wanted further information.

The interferons are contraindicated for me b/c I have a history of VERY severe depression and none of my docs think we should even risk it right now. So, the neuro said he'd write the letter.

Fast forward to this morning (Wednesday) - and I get a call from someone in his office who says, "Dr. W has written the letter, where do you want me to send it?" And I'm like WTF?!?! You got the same letter from Blue Shield that I did - you're supposed to fax it to them! She said she would. Thirty minutes later, I get a call from someone else in the office who says that Blue Shield just called to tell them I wasnt approved. So I asked her if they sent in the letter via fax to them - and she had no idea what I was talking about - even though it was she that I spoke to on Monday and yesterday about this!! I refreshed her memory and she said she'd check. she told me that BS said I'd have to appeal - so I asked her if they would help me with the appeal, etc. and she didn't have anything to say! I couldn't believe it.

In the meantime, I called Blue Shield (aka BS) - and they said they didn't get a fax today - but that they received the additional information on Monday!! and that they based decision on that. I was thoroughly confused. I said, no, my doc's office said they just faxed it to you. I should've known better b/c when I asked them to fax BS I also asked them to fax to me - and I didn't receive it either!!

Grrr. I remained calm and called doc's office again. I said please re-fax it to me and BS. I also asked if somehow our lines got crossed - and did they send something else to BS on Monday after they received that letter. She said no, they didnt. I called BS again - and they had gotten the fax now - and they said they would put it back to be reviewed again.

At this point, I'm not anywhere near optimistic. I read the letter the doctor sent and it was one sentence and very bland. He could've been a little more aggressive/assertive - and pled my case. As a backup, I left a message for my shrink, hoping he would write a more impassioned letter. He called back tonight and said he would, but he wanted me to come in and write it with him - and he can't do that until Friday.

I'm so exasperated. BS was going to re-evaluate my stuff tomorrow - but now I need to call them and tell them not to do it until Friday or Monday when they have other letter.

In the meantime, like I said, I'm not the least bit hopeful right now. None of this has gone remotely well for me for the last 5 or so weeks. I've never had problems with BS approving stuff for me - so this is a first.

Until now I have barely taken the pain meds the doctors have given me - b/c I don't like pain pills...but now - I'm taking them. They aren't killing the pain....but they're making me "numb" emotionally - somewhat.

I'm so tired of the pain...I'm tired of crying. I'm just tired.

Sorry this was so long - I don't know what to do - and I guess just getting it out helps a little.

~Keri

ps/all of this aggravation - fighting to get on a drug that might kill me or destroy my liver or give me cancer.... lovely, huh?