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First appeal denied, though famous and good neurologists.

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My ivig was initially approved then cancelled last minute. The first appeal was denied. My neurologist and an RN are heading up everything, providing all the necessary documentation, writing the letters, and my neuro plans on having a peer to peer phone review. He provided all their research including latest studies.

 

BUT 2 days ago I got a letter from insurance stating that they will not approve unless it's : PID or ITP - those are the ONLY 2 disorders they will approve for according to this letter.

 

We will now have to work on 2nd appeal. Some lady from insurance said maybe I can take a different path, but I've literally done everything I can do and tried everything I can try....... this is it for me. And I'm completely exhausted and spent and have nothing left to keep fighting and I have a bad feeling that I'll never get well. There is concrete evidence of inflammation in my brain and body, though that does not seem like enough. Labs clearly showed autoimmunity (hyperactive immune system, highly elevated pro-inflammatory cytokines, Low NK cell functioning and NK cell count, abnormally low T cells, consistently rising and elevated platelet levels, then the abnormal CT and PET scans)...... we are waiting for LP results. Autoimmune encephalitis is written through-out my records.

 

They lastly mention that they've never seen such an abnormal PET scan in a 27 yr old female. So much so that the radiologist paged my neuro right away highly concerned and wanting to know my background. With all this evidence, it does not seem like insurance will cover it, b/c the simply do not want to pay for it.

 

Frustrated. Doubled up on all my sleep meds and not sleeping, it's been days and days. It seems like I've become completely tolerant to klonopin and they are reluctant to prescribe xanax any more. I have doubled, tripled, my klonopin, and it only seems to get me in a relaxed state, odd b/c just 2 weeks ago in NYC I was sleeping okay, I would be so tired I'd just collapse on the hospital bed into a deep sleep, this is not the case now.

 

I've seen many sleep specialists, tried just about everything out there including xyrem which only made me high. The problem is my brain b/c one of my first symptoms was insomnia. It is sending me into bad places psychologically and I can't do anything but lay in bed and get on computer a bit.

 

Everything also makes me sedated so if I add on more things, I'll be sedated and unable to function the next day, when this happens my ocd goes out of control. A lot of it is just being so disabled by fatigue.

 

Sigh.....................

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Ophelia,

 

When we were appealing a denied IVIG plan for our son, the rejection letter said that after the first appeal is denied, you can chose to appeal it to an outside board which is not run by the insurance company. You have this option after a second appeal to the insurance co as well, but a health insurance advocate through my employer said we'd have a better shot if we went straight to the outside board, which is more apt to consider and weigh the evidence rather than reading from an insurance company script.

My understanding is that this is the process for all insurances.

 

The insurance advocate gave us a 50-50 shot in our appeal to the outside board, saying we had a pretty solid case. Yours sounds even more compelling/evidence based/solid. IVIG appeals do win.

 

I will repeat waht was told to me when I was wasting a LOT of energy being angry at/depressed by insurance company ridiculousness -- don't think about it. It's not worth your energy. Please put your energy into making sure you win this appeal.

The lady at the insurance path said the same thing to us as she said to you -- mayvbe you can try a different path. You know you can't and don't waste your time dwelling on their party line.

Have you gotten any insurance advocates involved?

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Ophelia,

 

When we were appealing a denied IVIG plan for our son, the rejection letter said that after the first appeal is denied, you can chose to appeal it to an outside board which is not run by the insurance company. You have this option after a second appeal to the insurance co as well, but a health insurance advocate through my employer said we'd have a better shot if we went straight to the outside board, which is more apt to consider and weigh the evidence rather than reading from an insurance company script.

 

My understanding is that this is the process for all insurances.

 

The insurance advocate gave us a 50-50 shot in our appeal to the outside board, saying we had a pretty solid case. Yours sounds even more compelling/evidence based/solid. IVIG appeals do win.

 

I will repeat waht was told to me when I was wasting a LOT of energy being angry at/depressed by insurance company ridiculousness -- don't think about it. It's not worth your energy. Please put your energy into making sure you win this appeal.

 

The lady at the insurance path said the same thing to us as she said to you -- mayvbe you can try a different path. You know you can't and don't waste your time dwelling on their party line.

 

Have you gotten any insurance advocates involved?

It's really good advice, printed out and gave to my mom. We will try this.

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