Anyone have negative spinal tap and insurance still covers IVIG?

Negative spinal tap reason insurance denying IVIG. EMG is definite for demyelinating neuropathy . Insurance required spinal tap to start treatment. Because spinal tap was negative my insurance is now denying coverage for IVIG. How common is it in this community to have negative spinal tap?

I'm in the insurance industry. As the guidelines for diagnosing include a positive protein identification from the spinal tap, I would expect them to deny IVIG therapy due the cost of this course of treatment. I checked with some of my contacts in the review unit and they told me the cost for this therapy is often $500,000 per year. Even with the positive spinal tap, the insurance company will look to see what other therapies you have tried previously and the results of those before they will approve IVIG therapy.

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I'm extremely appreciative of you responding to my post and looking into this further for me. I'm very disappointed and frustrated since my symptoms are getting worse by the month. My doctor tells me that a negative spinal tap doesn't really mean anything with my results from EMG and nerve conduction. He hasn't run into this problem before.

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Which carrier are you covered by? Most have appeals processes. I might be able to help with a little advise.

Have you tried other therapies while working on the IVIG problem? Anything worked?

My son has had 2 lumbar punctures and both were negative for elevated proteins. It definitely happens. He was first diagnosed with Guillain-Barre’ Syndrome, then about two months and 3 relapses later CIDP. The elevated proteins were not necessary for diagnosis I assume.

I am sincerely sorry about what your insurance company is doing to you. Countless individuals pay faithfully for years, never using their benefits and then at the moment of truth when the benefits are necessary, the company betrays them and continues to collect premiums. I used to be in the insurance business about ten years ago and I am still haunted by the memories of that industry and the unethical practices undertaken. I hope you get tge treatment that you need and soon.

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Thank you so much for taking the time to share you and your son’s experience. It’s incredible how hearing from others helps emotionally. :slight_smile:


I have United Healthcare. Steroids give me too many side effects. I’m using gabapentin and percacet. My dr tells me that IVIG is the only true treatment. I would so appreciate any help you could give! My dr is referring me to a neuromuscular specialist at UC Irvine, hoping that a second opinion will help my case with the insurance company.

I was diagnosed 2 years ago. I didn’t have the spinal tap because I had a sural nerve biopsy showing a badly demylated nerve confirming the results of the EMG and other tests. My Doctor about flipped out when United Health Care denied IVIG. They still wanted the spinal tap even when he was showing them a demylated nerve. I ended up not having it because the Doctor didn’t feel it would show elevated protein and they’d find another reason not to pay. I declined steroids because of the side effects. I live and work with a great deal of pain and slowly am losing function. Will probably not be able to escape the steroids forever. So sorry you are burdened with this so young. :disappointed:

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Its interesting to read all the comments. I have one question regarding insurance and was wondering if anybody has any advice. My neurologist asked for an IVIG about 3 months ago but it was denied by the insurance, claiming that I could still work and did not need it. In my situation I had my initial symptoms about 1.5 years ago but I never received a spinal tap and the Nerve conduction tests came out negative. Initially they did not even know what I had although all my symptoms pointed toward GBS, probably a milder form. Now I’m experiencing some sort of recurrent weakness and cannot work now. I’m hoping it is temporary and will improve but asked the neurologist to ask again for the IVIG. I know everybody is different and probably the insurance carriers have different criteria, but anybody knows whats the best way to “convince” the insurance to approve the treatment. Someone mentioned that it costs 500,000 a year but I read somewhere that its’ about 30,000.

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You can call your insurance first usually. Most of the time someone will at least explain the criteria. At a minimum they are generally more accessible and free to talk with. It cant hurt, and it might save trips back and forth to the neurologist to get everything you need. If they have printed criteria for aproving ivig you should bring that with you to see your neurologist, there could be a multi step process of cheaper treatments.

Once i was diagnosed with GBS i got assigned an insurance case worker, she called me every few days, checked on PT progress. Obviously most of her job was to limit their expense, but they did spend an hour going over all my coverage, copays, costs, and future costs of pt while i was in the hospital when i asked. I wasn’t going anywhere, and it made me feel better knowing what it was going to cost so we could start planning early.

My 5-course ivig treatment, 2 days icu, and 5 days in a medical hospital had an accepted payment from insurance of $160,000. I have read actual accepted cost for ivig is around 10,000 per treatment, but of course they might bill anything.

Your post on your seeking insur. coverage for IVIG Tx for your possible GBS condition with ‘recurrent weakness’ was written 4 yrs. ago. But I’m curious how your condition is now, whether you ever got a definitive diagnosis and got IVIG Tx for it, and if so, did it help?
Hopefully, your condition has improved and you’re doing relatively okay now.